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Hello Visitors

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.

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A Favorite Author Shares Her Journey With (Rare-ish) Illness

Maggie Stiefvater wrote:

I had to delete so many chapters of the Dreamer Trilogy, right up to the last book, because I was too angry.
Angry that when I got sick, I realized that once I faded to invisibility, the world wouldn’t notice.
Angry that when I first began to explain my illness to the industry, trying to reduce my tour hours, a member of my publishing team replied by sending me an article about an author who’d faked cancer to get sympathy.
Angry that it wasn’t until I collapsed with sky-high potassium and a fading heart on tour that doctors stopped trying to diagnose me with panic disorder or depression...
More at link

Women poured their hearts out in the comments, many with varying forms of autoimmune disorders. Women are, in fact, more susceptible to autoimmune disorders: https://www.verywellhealth.com/why-autoimmune-diseases-affect-more-women-5095040

While I have been blessed to have some really great doctors...

...the not so great ones, the dismissive ones, the ones who are angry with me for being fat because they think that means I don't care about my health and never do anything positive to improve it (and therefore think of me like doctors have come to think of non-vaccinator and non-mask wearers presenting with Covid), the sexist ones who habitually dismiss women as too emotional or outright "hysterical," (no my womb isn't wandering, it's been removed)...all of THOSE doctors are sometimes worse than the effects of my actual illness. I have had suicidal feelings over the way I'm sometimes treated by medical professionals.

I've actually avoided mammograms for the past few years because the last two were made so unpleasant by women who made it obvious they hated having me as a patient and being forced to touch my body. Silent except for absolutely necessary communication, lips in a tight straight line, faces pinched, they made me want to leave before the test was even completed but I knew I'd be charged and my insurance wouldn't pay. I've had warm, delightful women assist me with my mammograms so I know the difference. The test is unpleasant enough, no need to make it worse!

Reading Maggie Stiefvater's thread today inspired me to open a dialog with my ob/gyn about the above mammograms and my fears as well as send an email to the HMO where I had those two mammogram experiences, excerpting the above account.

We need to start talking back instead of falling back on our training to always be nice to people in authority. I don't mean be abusive. I mean asserting ourselves, respectfully but firmly.

I want to be clear that I despise the increasing trend of physically or verbally attacking people in the health care field. The only place that would be appropriate is if you, yourself, are being physically attacked or molested.
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Part one of vaccination completed

Dave and I got our first COVID vaccination yesterday, took us nearly half the day because we drove to another town an hour away. Those were the first appointments we could register for online. We were also waiting thirty minutes after our shots by their request to be very sure I had no adverse reaction. Felt fine. Took a long nap when I got back and then slept again last night. I'm relaxing today. So far my arm is sore and I had a mild fever with chills, felt tired and had a migraine but one of my meds also gives me migraines and a storm is moving through. Migraine is my destiny.

We go back in 21 days because we got Pfizer. Of course we will continue to wear masks when we go out even after we are fully vaccinated, two weeks after the final shot.
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Voting is a Life or Death Issue

We are getting a real life lesson in how important our vote is at every level of government. If we don't vote we've allowed other people to decide who is going to manage our local, state and federal response to serious and sometimes life-threatening disasters and threats as well as create and maintain the infrastructure that is necessary to meet these challenges.

Of course our votes should be informed by research. Each voter should go to the candidate's website and check out what they say they're going to do, in detail, about the everyday problems and issues of our town, state, country. That's a start. There will also be opportunities to look into their history if they've held office before or their actions in whatever profession they've pursued before. Observe how they interact with the press and others on the campaign trail. What people do they choose to have around them and what are their reputations?

A lot goes in to evaluating people before voting for them in a thoughtful and informed manner. And it should.

2020 has taught us why. Lives are literally being saved or lost based on action or inaction by elected officials. Don't let other people have all the say in who that is going forward.
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The Nib: Medicine's Women Problem

"I had been sick for YEARS. Permanent damage had been done to my bones, my eyes, my heart."

Women of all ages experience medical bias. The younger you are, the more trouble you may have asserting yourself. We are taught that doctors are authority figures and we should trust their judgment. But sometimes their judgment is skewed by their unconscious bias. This comic illustrates how bias caused more than one doctor to overlook a serious set of symptoms.
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This is Heart-breaking (and Deadly)

Fat Patients’ Bias Epidemic: https://medium.com/@thefatshadow/the-bias-epidemic-8f27e79bd21c

Excerpt:

"Have you ever been misdiagnosed by a doctor due to your size? What were the repercussions of your misdiagnosis?” I asked on Twitter. I had become accustomed to a steady trickle of responses to questions like these. But this time, I was inundated.

I read their stories as they came in — frank and heartbreaking tales, too often told by loved ones who survived the fat people they’d lost to misdiagnosis. Cancer, multiple sclerosis, thyroid conditions. And every time, the doctor’s recommendation was the same: just lose weight.

And they weren’t alone. Rebecca Hiles was told that her respiratory issues — including bloody coughing fits — were due to her weight. It took six years for a doctor to properly diagnose her cancer. Vilma Soltesz didn’t even make it to the doctor’s office — she was kept from boarding an airplane that could have delivered her to lifesaving care. She died half a world away, waiting for a flight. Sarah Bramblette and Patty Nece shared their stories of misdiagnosis with the New York Times.


For awhile news stories were highlighting the obesity epidemic that was killing us all. Then a review was done and they dramatically reduced those death statistics due to faulty methodology and data. NOW we find that medical bias may be playing a serious role in the deaths of fat patients. I recall the obituary that indicated a fat woman's symptoms were ignored until finally, with just weeks to live, she was diagnosed with cancer. How often does this happen?

My liver disease diagnosis was delayed because my doctor wanted to lecture me about weight loss surgery and responded to my mention of stomach pain with a reference to depression often causing random body aches and pains. While true, I was a 59 year old with other serious health issues so didn't it merit some examination? Also he announced at the beginning of that visit that he wasn't going to do a physical exam. Thus he missed tenderness in that area and also in my spleen which showed as enlarged on the CT I received when I went to Urgent Care for my pain. (A previous exam in Urgent Care when I went in for a UTI revealed that tenderness.)

I was too persistent to just slink away and accept the BS answer I got. But what if I wasn't? What if even now I still didn't have a liver disease diagnosis for which I'm busy reducing fat and sugar intake? What if I was busy ignoring that pain because this doctor, an authority figure, told me that it was a symptom of my depression--even though that's never been a depression symptom before in the many years I've had episodes of depression? When would I finally learn that I had liver disease--when I jaundiced?

When I was 42 a savvy Urgent Care doctor took my cardiac symptoms seriously and sent me to cardiology, leading to my quadruple bypass and saving my life. What if he had merely told me to go home and lose weight and I wouldn't have pain on exertion anymore?

Medical bias kills.
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Radiology and patient comfort

I was sent to radiology for x-rays of my feet, primarily my big toe joints. Over the last decade I've grown increasingly anxious because my back has grown more painful on a good day and often the positions I'm asked to move into hurt. Both my lumbar and cervical spine have problems and I cannot lie flat without severe pain. Yet that is what was required for these x-rays. However, it wasn't necessary. And I saw various types of wedges nearby as I left that could have been used. I did ask for a second pillow since the one I had wasn't firm at all so my neck wasn't supported. Frankly I will never go back for an x-ray unless I bring my own gear. I now have a folding wedge and I have small pillows.

The other problem was a smooth sheet on top of a slippery surface. My feet kept slipping; there was nothing to grip on to. Nothing I can do about that unless I bring a mat with grip tape on both sides. SMH.

Everything I am finding on google about patient comfort or care in radiology is about alleviating emotional anxiety. How about helping patients who are not in their twenties or thirties not hurt themselves. I'm home icing my back now. I could barely get back into my car and out again once I got home. I was planning on going to the store while I was out but knew I had to come straight home.

My neck hurts too but not like my lower back. I hope I recover enough to enjoy my birthday. I wasn't even expecting to have an x-ray today.

I had the sense that while the x-ray tech was sympathetic, what I was experiencing was so far outside his own experience that he didn't really understand how severe my pain was. And he doesn't need to know--but should have been trained to accommodate it anyway. I'm going to have additional pain for days now--I know how this goes. They ought to have a repertoire of techniques to assist patients with limitations and you should be asked if you need them before you even get on their table. My back and neck didn't need to be in agony for FOOT x-rays.
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COUNTDOWN TO 60: (Dec 3) 1968- (Dec 2) 1978 Part II

After a dramatic scene with my mom and grandma when Mom found my suitcases in her trunk during a trip to Keokuk, where I planned to catch a bus to the St. Louis temple, I was finally on my way. Grandma said she wouldn't give me my birthday government savings bonds she'd purchased for me every year if I left and I told her she could keep her money; I was not for sale.

Once I got to St. Louis and was picked up by devotees I found out that some of the women were in India and the few remaining had been sent to Chicago. I would be traveling by train to the Chicago temple.

My time at the temple was a mixture of things I loved and difficulties when I asked to remain there and found myself being groomed for selling books at the airport rather than serving the Deities inside the temple as I had been doing (making vases, sewing and other activities). I wanted to be a pujari. I knew I was too shy and introverted to make a good "book distributor" or "sankirtan devotee." I have written about this time in more depth here: https://tapati.livejournal.com/345999.html

The above entry includes meeting my first husband (Mike aka Mahasraya) and falling in love, a story which is continued here https://tapati.livejournal.com/346129.html where we fell in love (or lust) and tried to make it an instantaneous committed relationship. Since it was also my first serious relationship this was misguided at best. (Kids at home--don't try this!)

My mom had heard I left Missouri for Chicago and that I had left that temple as well. By Illinois law I was NOT free to leave home and be on my own without an emancipation process. She found me at the Salvation Army runaway shelter and they had to allow her to take me home against my will. I tried to argue that I had met someone (he's a magic man, mama!) and she said he could come too, as mentioned in the post linked to, above. He eventually went back to Chicago and Mom agreed I could at some point join him--then decided to move with me. This was part of her mental illness--Borderline Personality Disorder. She couldn't let go. In Chicago we shared a studio apartment and it was very cramped. We had a blow out argument one night and I had to flee. I met Mahasraya and we went to stay with a friend. We were trying to figure out which temple to "surrender" or move into when we ran into Swarupa, the devotee I'd been corresponding with in L.A. He invited us to come to L.A. and we could stay with him and his family while we looked for an apartment and a department to serve and be supported by. I got the rest of my stuff from my mom (a very tense scene) and we flew to L.A. on August 10, 1976.

This post https://tapati.livejournal.com/285762.html takes me from living in a Spanish apartment building on Watseka Avenue near the temple to losing our housing when I got pregnant the following year (1977) and staying in an unheated laundry room, sleeping on the cement floor and applying for welfare when Mahasraya found and then abruptly quit a job that could have supported us. He began abusing me soon after we moved into our first apartment and the abuse continued throughout my pregnancy and beyond.

These next two posts, https://tapati.livejournal.com/285953.html and https://tapati.livejournal.com/287585.html continue my account of violence amid childbirth and my son's first year, including an attempt to leave Mahasraya. I aborted that attempt which involved a plane flight to Hawaii. I was too afraid to be on my own in an unfamiliar place. It is a mark of how difficult my family was that I didn't turn to them instead.

I didn't realize that I was already pregnant with Ramya until the morning sickness (hyperemesis gravidarum) began. This post is an account of that period of time before I left once again after a terrifying incident of abuse that I felt threatened my pregnancy: https://tapati.livejournal.com/288309.html

I ended up sharing an apartment after a brief stay with my friend Nitai dasi. While I was renting a room in CV dasi's apartment I turned twenty. My daughter's birth was five months in the future. (Yes that means she will be turning 40 soon.) This is an account of that time and how I sadly got back together with Mahasraya: https://tapati.livejournal.com/289500.html