If you missed earlier parts of our exciting and gross-but-still-riveting lupus story (and why did you? shame on you!), you’ll just have to turn your back on Netflix for fifteen minutes while you catch up. Think you can handle it? Here you go, hon: Part 1, In Which Babe Feels a Pea.
The Eat-Everything-You-Want Diet
Where Babe hits it lucky.
Babe had donated blood regularly back in Ohio, and she assumed she’d do the same in Los Angeles. She was surprised when she went to donate. They turned her down!:
“You have to weigh at least 100 pounds.”
Babe laughed. She told the donation lady that she had weighed the same since college–123, and at her 5’7″ height, a weight she was really happy with. She never had to watch what she ate, and she had a huge appetite. She was just born lucky.
The lady made Babe step on a scale. Surprise! While she did weigh more than the 100-pound minimum, she was down to only 110. She now weighed less than the 117 she’d weighed entering high school.
No WONDER she’d dropped from a size 8 to a size 4…
West Coast Men Found Her New Emaciation SEXY
Study Questions:
How can WE catch lupus?
The Klutz
Where Babe gets a little clumsy.
Babe and her boyfriend moved in together. They were happy.
One day, while Babe was washing the dishes, she watched as a glass fell out of her right hand. It didn’t feel like it had slipped. It felt like one minute she was holding it, and the next she wasn’t. Two days later, it happened again. That definitely seemed odd. Twenty-so years of washing and rinsing dishes since childhood, and never a broken one. Now, two glasses in two days.
Then, Babe started losing her balance. She’d be walking across the living room and suddenly stagger slightly as she counterbalanced to save herself from falling.
That was also odd.
Study Questions:
Why doesn’t Babe just get a dishwasher? (And a cane?)
The Rushing Rash
Where Babe takes a vacation and gets a surprise–What fun!
Babe’s girlfriend’s boyfriend had a pilot’s license. So the girlfriends and their boyfriends decided to split the cost of a small plane rental, fly up to Santa Barbara for the weekend, and pretend to be rich people. Cool!
It’s Just A Crumbling Church Built Out of Mud. How Nice Could It Be?
As soon as they got there and checked into the hotel, though, Babe didn’t feel well. She had a splitting headache, and she felt hot. She lay down on the bed.
Her eyes felt funny. She reached up to rub them, and they seemed all…bumpy. Babe went into the bathroom and turned on the light. Her eyes were entirely covered with tiny red blisters!
Study Questions:
This girl flies in private planes to rich
resort communities and we’re
supposed to feel sorry for her?
The Pokey Pins
Where Babe gets oozy and crusty.
Over the next hours, Babe’s fever rose to 104 and the blisters spread to her hands, arms, and body. They were as small as the head of a pin.
When They Say Pinpoint Rash, Here It Is
Every single one felt like a needle was stabbing into her. When a blister broke, it left a little pit. Where there were clusters of them, they joined together in big sores, and oozed gunk that dried and got all crusty. It was disgusting.
Babe didn’t want to spoil the nice weekend for the others. She stayed in the room, curtains drawn, burning with fever, suffering with the headache, and hurting terribly from the rash. Her boyfriend brought her cold washcloths.
She didn’t eat anything from Friday night until Sunday morning, when it was time to leave. By then, her eyes were entirely crusted over and unable to open to more than slits. They hurt a lot.
Study Questions:
Wasn’t the boyfriend worried about catching it?
The Second Disappointing Rash Doctor
Where Babe gets more top medical advice.
Babe hurried straight to another top-ranked dermatologist at Cedars Sinai. His diagnosis?
“Some new kind of eczema,” he pronounced, and sent her home with a cream. He had no comment on the eye involvement.
Some NEW kind of eczema?!
If that’s what he thought, why wasn’t he, trained to know everything there was to know about the skin, at all interested in a brand-new skin ailment?
Babe decided to see help elsewhere.
(Hint: Not “Please.”.)
Study Questions:
Does this guy seem as much of a joker to you as he did to Babe?
The Helpful Student Clinic Doctor
The Disappointing Famous Eye Clinic Doctors
Where Babe’s dad may know more than her doctors.
Babe went to the Student Health Clinic. The doctor was a warm islander who was clearly shocked by Babe’s oozing, crusty appearance and slitted eyes. She immediately referred her to The Famous Eye Clinic.
The Famous Eye Clinic doctors looked at Babe’s eyes and went away and got more doctors and they all murmured among themselves and looked at her eyes some more.
Experts In Their Field
At the end of an hour, they had decided:
“You have some kind of adenovirus [ADD’no-virus–“ear, nose, and throat thing”]. It will clear up on its own.”
Did This Qualify As a Literally-Comical Eye Exam?
Babe phoned her 80-year-old dad. He said:
“Horse poop. It sounds to me like herpes. Shingles.”
Study Questions:
Who sounds like they know more: The eye experts, or the dad?
You know how guys’ hands immediately stray south when another guy gets hurt down there?……….You think things woulda’ gone better had the docs gotten close enough to LOOK at Babe’s blistered blinkers?
The Eye Scare, and Two Helpful Eye Doctors
Where Babe gets scared. And scarred.
Three days after the visit to The Famous Eye Clinic, Babe woke up blind in her left eye.
She made her way back to the sympathetic island doctor,
Her Nurse Was Also Caring
who seemed absolutely disgusted with the famous clinic. This time, she referred Babe to an 80-year-old ophthalmologist on Wilshire Boulevard .
Doctor I. (eye know, eye know…but that’s really the initial!) immediately diagnosed ocular herpes. (Ewww!!)
He referred Babe to a specialist at the famous Cedars Sinai , who treated her successfully. Babe was left with only one oval scar on her cornea, just off-center, which luckily faded away over the next few years.
Babe found out that ocular herpes is the leading cause of blindness in young adults. (She’d never even heard of it–had you?)
An Annual Event
Where Babe becomes a calendar.
Exactly one year after the terrible, painful rash, Babe was shocked, frightened, and depressed when she woke up to discover she had it again.
……………”WHAT? Is That a SPOT I See?!”……………(Guess Doggy’s Name–Tee Hee!)
The year after that, the same thing happened. And the year after that. And after that. Every August, like clockwork, the rash would return.
However, the bright side was that each year it was less severe and less widespread. After several years, it settled down so much that Babe would get only the horrendous headache, and a sore or two on the outside corner near her left eye. Thank goodness.
Study Questions:
What was it that happened in August that triggered this?
Are we ever going to hear the answers to all these dumb questions?
Part 5, In Which Babe Lives La Vida Telenovela
ADDENDUM
Lupus folk are particularly susceptible to the herpes virus. Maybe this is why the calendar effect occurred–If herpes IS what the skin rash was. Maybe this is also why Babe also got the ocular herpes twice more. One of those times her optometrist noticed it when both Babe and her Famous Private University (mis-)managed-care opthalmologist hadn’t. Thank you, Dr. K.3!)
Part 5, In Which Babe Lives La Vida Telenovela
The Last Half 
Victo Dolore
/ 2015/05/14(Shakes head)
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Outlier Babe
/ 2015/05/14I like YOU, Victo, despite your profession.
🙂
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Maggie Wilson
/ 2015/05/14Is/was there an annual trigger for the August event? Some bloom or industrial/agricultural discharge?
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Outlier Babe
/ 2015/05/14We were living in a horrible slum (thank you, my abusive ex-, and my abused past that led me to DECADEs of that!). Those neighborhoods do have more unmonitored paint and chemical use and dumping (down storm drains), as well as more meth labs, and tons’o’ backyard car repair shops and chop shops (more paint and chemical use).
We had a chop shop kitty corner to our backyard, and drug-using gang members living in three of the five houses that touched our backyard’s property line.
Did some illicit chemical-spewing business peak–or gear up– in late August. The Mexican families returned from Mexico at this back-to-school time.
Or was this nothing to do with the near neighborhood, or anyone from south-of-the-border, but something such as insect control spraying somewhere?
EXCELLENT question, Maggie! One I will likely never know the answer to, though.
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Cotton Boll Conspiracy
/ 2015/05/14Yow! I am stunned at the number of misdiagnosis stories I hear about. And the complete lack of understanding of the term “bedside manner.” “Some new kind of eczema”?!? Did he give you a bottle of snake oil on the way out the door?
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Outlier Babe
/ 2015/05/14One of the therapists I had said that many–most?–doctors do not like to be confronted with ailments they do not have answers to–that it can bring out the ugly (I paraphrase here 🙂 ).
I think this doctor had no idea what I had, and just tossed out a diagnosis because he was the type who would never feel comfortable saying to a (female?) patient those three ego-shattering words: “I. Don’t. Know.”
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Paul
/ 2015/05/14Bang, smack on OB. I’ve seen it many times in my journey through the medical system. You develop an antenna that swings around and tingles when you’e being fed a line of bullshit because a doctor doesn’t know and doesn’t want to admit it. It drives me nuts – I really, really want to trust my docs and they make it so hard. I have actually had to force tests because the doc did not know and did not want to be faced with the fact that they did not know.
Well said.
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Outlier Babe
/ 2015/05/14Credit goes to my therapist–who was wonderful. Wish I was still seeing her. Can’t afford it.
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Outlier Babe
/ 2015/05/14I’m sorry YOU’ve been through that so much, Paul. In my case, it’s just qualify of life at risk–not my life, so far–thank goodness.
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Cotton Boll Conspiracy
/ 2015/05/14Hadn’t thought of that – though one would think that a doctor would, at that point, want to consult someone else to find an answer, rather than shooting from the hip.
“Hmm, that strange-shaped black mole on your back. Could be cancer or just a really big mole. Why don’t you come back in a year and we’ll see what’s happened to it. I wouldn’t want to admit that something is beyond my otherwise omnipotent grasp of medicine.”
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Outlier Babe
/ 2015/05/14One would think. TV doctors used to do this. Maybe they should start again, so that real doctors get better role models.
🙂
A good primary care doctor handles this function by sending a patient on to a different doc in the same specialty when it seems the first one didn’t hit the spot. But to depend on the PC doc to decide whether the spot was accurately hit, when s/he isn’t a spot specialist is not the ideal solution is it? Your consult approach is so much better.
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Almost Iowa
/ 2015/05/14When my daughter was ten, she came down with a massive attack of shingles. It was pure agony for her. The doctor we talked to said it was stress but we couldn’t figure out why she would be stressed. She wasn’t being bullied [God help the bully who went after her]. She had a lot friends. She was a good student…. So what was happening?
When we got back from the clinic, I did what I always did with the kids, I grabbed a football and headed out to the backyard to toss the it around with my daughter and her younger brother….it hit me when she started talking about school.
Dad wasn’t really listening.
In my daughter’s classroom, the desks are arranged in “pods” of four. My daughter’s pod consisted of her, an ADHD boy, a Guatemalan girl who struggled with English and a hearing impaired girl. My daughter was so willing to help that her teacher loaded her up with responsibility.
I talked to the teacher.
“OH!” her teacher said, “but she was so good with the other kids!”
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Outlier Babe
/ 2015/05/14Shingles at the age of ten! Oh, Greg! There is reason to think the herpes susceptibility is variable depending upon a whole buncha stuff including genetics. My one son had chicken pox (also herpes) multiple times as a kid. That ain’t supposed to happen. There’s some research now that indicates that my herpes experience may have predisposed him, via the gift of epigenetics. So while your daughter’s teacher may have oopsed big-time regarding her, your daughter may have had a predisposition to shingles as a gift from a relative.
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Paul
/ 2015/05/14That is mind blowing OB. I’ve always thought that a lot of knowledge is to be gained in failures. What you describe is an epic failure of the medical community. Mind blowing.
Thanks for sharing that with us. I’m starting to understand why you are cynical of the system.
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Outlier Babe
/ 2015/05/14Cynical? Hardly. I despise it, and have little respect for most doctors, who, as Victo points out, are only human, but, as I point out, believe they are more.
One little story:
My first visit to Famous Private University’s medical buildings. Leaving my first building, I enter elevator as last person in. So we are all standing, me facing doors, with a gaggle of happily-chatting relaxed doctors, male and female, behind me.
The elevator hits the lobby.
It is like a game of nine-pins: I am almost mown flat as the doctors push past me to exit the elevator. This is not because they are in a rush. It is simply because they feel that this is their due. I am not a doctor, and thus am not a person of signficance. i naturally should step aside for them.
This maneuver was often re-attempted during the years I worked with physicians, although after that first time, I never again allowed doctors behind me to rudely bowl me over and precede me through a doorway.
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joeyfullystated
/ 2015/05/14Well, since twice now I’ve had a herpes outbreak that busted out not just as a lip sore, but as swollen lymph nodes, a fever and aching all over, I’ve got to keep the herpes med on-hand for a flare now. It’s overnight and quite debilitating. The med makes all the difference, I heal much faster. Do I know the trigger? No. But it does happen as stress disguised as happiness comes my way.
I’m so sorry you experienced such a horror. I mean, really, that’s BAD.
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Outlier Babe
/ 2015/05/14Ah, yes–THOSE little lovelies. Aren’t they a pleasure? Sorry they’ve hit you so hard. I used to be done in by those, too. Back then, I was lucky enough to have a student worker in the office whose mom was a doctor, and he said that she said that I should add Lysine supplements to my diet. Cut the outbreaks down in frequency.
Thanks for your sympathy. It actually does help make up for the zero I got at the time, which may be my motivation in posting all this.
🙂
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joeyfullystated
/ 2015/05/14Thanks for the tip 🙂
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Outlier Babe
/ 2015/05/14You are welcome. Hope it either helps, or is unneeded.
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Silver in the Barn
/ 2015/05/14I would love to know what a Chinese doctor would do for you, Babe. I’ve often wondered that with Jen. If we lived in Taiwan, would she be on four powerful anti-seizure meds? Rhetorical question, to be sure, but my ten-year long ordeal with her has shown me that in truth, there is so much doctors just don’t know. The fact they don’t admit it to you and then do their best to get you help is the tragedy. I remember desperately trying to get them to believe that Jen couldn’t hear anymore. “Oh, she can hear when she wants to.” Murderous rage, I tell you. She was reading their lips by then.
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Outlier Babe
/ 2015/05/14Holy SH#T!!, Barbara!! Those f#cking bastards!!! I haven’t been “with” you that long–had you already posted about that?
Was Jen already such a proficient lipreader that she understood their slams? (As if she could not read it in their faces!)
Makes one want to believe in reincarnation, doesn’t it? Welcome to your new life as cockroaches, fellas!
When you get to whatever post of mine that my miniscule hearing challenge will be mentioned in (I don’t think that part is written yet, so will have to throw it together quickly once up to that point), you’ll see that all docs but one discounted me. But I wasn’t subjected to such overt disdain. Not about my hearing, anyway.
YOU should be writing your own series. Then, we can publish a back-to-back upside-down book. Do you know the kind I mean? Ask Victo to write the foreword. THAT would be something, huh?
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Silver in the Barn
/ 2015/05/15No, Babe, I’ve never written the story of what happened to Jen and doubt I ever will. The parts I can bear to tell at least have some form of happy ending like the otoxicity story I wrote at Christmas-time. By the way, her ENT toldl me she wasn’t a candidate for cochlear implant. Thank God for a Costco audiologist who steered me towards just exactly the right medical team to get her a cochlear implant device. If I had listened to her doctor, she’d still be deaf. What kills me about this is thinking of all the other people out there sans advocates and how the quality of their lives must be affected.
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Outlier Babe
/ 2015/05/15I understand. When I read blog posts that consist merely of misery, I think “I understand why you need and should write this, but why share it?”
But remember then that my own blog began solely as my own diary. I gave not one thought to readers, and didn’t understand that blogging is conversation, and responsibility.
For those “misery only” posts, I also wonder if any processing is happening, or if a mere recitation is all. Thinking of past unpleasant events, and particularly memorializing them in writing, is pointless–regret is pointless–unless healing or growth comes out of it–for you or for someone else. If a post of yours about Jen contributed to change in physician behavior, oh ho! That would be something. But you and I know that won’t happen. *(FOOTNOTE comin’)
So, if those “Jen stories” consist only of pain, and will help no one, then I can see why you haven’t written them. But:
You might think about writing them anyhow. As private posts. And see where they go, Barbara. That’s how my Mommy Hyde series got written. That week I spent after my mom’s death writing those–the anger I had to work through–the anger I still feel–and the pity for poor little me–I am so glad I took that time and wrote it out. For a while afterward, I was able to go back and reread the posts, too, and finish processing. If I ever need to again, there they’ll be. I wound up posting them because I was so proud (I’ll admit it) of how well they turned out, but I was ABLE to post them because of all the healing that had already occurred through writing them.
(After posting, I received the amazing “added value” of supportive comments from you and other wonderful people like you.)
That said, if I were the Mom of a child who’d been transformed by tragedy, and was continuing to be transformed by it, I don’t know what I would do.
On a less-tragic note, but still the topic of potentially non-uplifting posts, these lupus posts of mine: I feel like they are now turned somewhat pointless, which is why I added more pics to Part 4 (which wound up adding length, and killed readers, it turned out. Ah, well.) I originally wrote them to help work through my anger during my divorce–my spouse made my diseases an issue in that. But I’d remembered the tale as funnier. Now it’s just beginning to seem like a recitation of symptoms. Stats show readers are getting turned off, too (perhaps just by the grossness). But I’m in it ’til the end, whereever it ends.
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Silver in the Barn
/ 2015/05/15I don’t have the skills to tell a story which begins with a bright healthy 29-year old in the prime of her life and ends with….you know. It would be a disaster. And I don’t need to do it for myself which you might find strange but is true. What I need is a funeral with all the attendant rites and rituals. Nobody except my husband seems to really understand that our daughter is dead, never to return, and has been replaced with what we have now. Child-like and sweet, to be sure, but not our former daughter. This occurred to me fairly recently when a memory evoked such a sharp pang of missing Jen that it was almost unbearable. See? Who wants to read this crap? And who could possibly understand such a dramatic statement?
I so agree about blogging being about conversation and sharing and I have been helped immeasurably by my blogging friends on the few occasions I’ve sort of gone there. In my Phantom son-in-law post, for instance, I received such warm advice and learned about the terrible losses others have experienced which only served to bolster me up quite a bit, actually. (Is that “up” redundant? Should it just be bolster? I digress.) Anyhoo….
Your Mommy Hyde series is masterful, Babe. Terrifying and enraging and heartbreaking. I can’t read much of it at one sitting without being deeply affected. My urge to protect and shelter you is overwhelming. I wonder if I would feel it as strongly if I hadn’t gone through Jen’s illness. I think I would. That’s some damn fine writing.
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Outlier Babe
/ 2015/05/15I think, now that I have heard you make such a statement, that you being bold enough to say it out on your blog would unlock the gates of hundreds of parents and spouses and siblings who have been sitting on the same exact thought and not felt free to say it out loud. They might still not be brave enough to comment, but an unnecessary weight–and don’t you bear more than enough already?–would be lifted from their hearts.
If you WERE to say it (Can you imagine the post header? “My Disabled Daughter Is Dead–To Me”. Oh, what a terrible person you are! What condemnation would follow! Except from those who bother to read the post. Except from those who are living what you and your husband are living. They would be helped, at last. And you could block the others, to help the ones who count.
But I know nothing, Barbara. I could be wrong. (I am an Aspie cold fish, and a crazy, and a b#tch, after all. Find my my own lost children, and just ask them.)
All moot if unwritten. But, to throw a compliment back, and honestly, your phantom son-in-law post was brilliant, and heartbreaking.
I have never read any but the finest writing from you, Barbara. I don’t think you are capable of any but. A couple of the other bloggers I read write beautifully-constructed pieces–they are amazing writers. Yours have no seams showing–one never gets the impression that you worked at the craft. The quality of the writing in your comments? Same. You apparently write the way you speak when you’re thinking before you speak, and you think deeply and speak eloquently.
We could never be non-virtual friends. I’d never win any points against you in disagreements!
😀
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Silver in the Barn
/ 2015/05/15Well, my dearest, we shall see what the future holds. For now, it is in the “no-fly zone.” And I thank you from the bottom of my little lentil of a heart for saying such nice things about my writing when I so admire yours. Now let’s change the subject to something more cheery like the condition of our nation’s infrastructure or something. Oh! We are taking Max on a plane ride Sunday (you know, like rich people) up to Northern VA (the 51st state, but that’s another story) to a huge Westie Rescue benefit. Stay tuned.
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Outlier Babe
/ 2015/05/25(ten days later…:)
Re-reading your gently deflecting remark followed by your redirecting comment about your upcoming flying trip, I see that you used admirable restraint in not telling ME to go flying when I persisted in not dropping a topic you’d already asked be dropped.
I hope Max had fun! Perhaps when I catch up on posts, I will find one of yours about the trip : )
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Outlier Babe
/ 2015/05/14Did it again:
My bestest first friend out here was Taiwanese Chinese. She had been a sickly, sickly child, close to dying many times. Her mom located a special herbalist of renown when she was 12, who came often to make special tea mixtures which her mother had to force her to choke down. My friend said they were so foul-tasting, she had difficulty not vomiting them up each time. This went on for, I think she said, a year. At the end of that time, she was as hale and hearty as her classmates.
Yes. The right herbs and acupuncture and massage, and–who knows? But then, simply getting nurturing of any sort would have counteracted the effects of the abuse, and it is those effects which, it is now thought, cause much autoimmune disease to spring forth.
I should be looking into acupuncture and massage–it has been recommended by a n Asian UCLA doc–but it would be another out-of-pocket expense. I haven’t yet blogged about my financials. Ugly…
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Master of Something Yet
/ 2015/05/14Geez Louise.
I’ve long thought that those applying to medicine courses should have to sit a humanity test. More important and relevant than whatever whopping study score they got to get a place.
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Outlier Babe
/ 2015/05/14Yup. Great idea. But instead of written tests put together by psychologists (friggin’ things–wait until I get to THAT post), the tests should consist of role plays witnessed by committees of laypeople observing from behind one-way mirrors, who judge the candidates by holding up scorecards with points.
I think what’s happening here in the U.S. is that in an effort to address the “whole patient”, we patients can get a robot version of “I care about you”–formulaic phrases, or a checklist approach. Or an unqualified armchair psychologist who spends more time on trying to suss out our state of mind than body, and is more ready than ever to ascribe both reported and observed physical symptoms to psychological causes.
With very little evidence–just going by the handful of docs compared to the whole of thousands–I have seen more males guilty of the robotics, and more females guilty of the touchy-feelotics.
I thus feel free to over-generalize based on pulled-it-out-of-my-arse-otics that this is representative of docs nationwide.
(My Aspie-robotic, more male-like thinking side finds this logical, while my female-enfeebled intuitive brain FEELS that it’s right.)
🙄
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Master of Something Yet
/ 2015/05/14Being fortunate not to have (so far) encountered a major health issue ([MOSY whacks herself on the head] Touch Wood) but having sat alongside friends and family members going through such things, I can tell you that it is representative of docs worldwide.
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Outlier Babe
/ 2015/05/14The virus has spread–something must be DONE, MoSY!
Or–is it our dissatisfaction just stress, and we patients simply need to learn to relax?
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Master of Something Yet
/ 2015/05/14HOW CAN I RELAX WHEN THE MEDICAL ESTABLISHMENT IS OUT TO GET ME????
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Outlier Babe
/ 2015/05/14Now, honey, don’t you worry that pretty little wooden head of yours.
(Goodnight, MoSY. This whole topic wears me out. Grrr.)
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Silver in the Barn
/ 2015/05/15Hi Heather, they become much better doctors after experiencing illness themselves, either personally or in their own families. When Jen was in hospital, I can’t tell you how many times an impersonal doctor would bolt out of the room as though the place was on fire. They couldn’t get away from me fast enough. The nurses, however, with years and years of experience with the critically ill and their families under their belts were godsends. Utter godsends. And they kept the interns in line big-time. Oh, I could write a book. I won’t, but I could.
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Outlier Babe
/ 2015/05/15Which may be why doctors were better doctors in some ways back when they lived within the communities they served. Hard to remain impersonal then, and easier to observe differences from baseline when you see baseline on a regular basis.
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Silver in the Barn
/ 2015/05/15A doctor’s quote published recently in the Wall St. Journal:
“When I look at my career at midlife, I realize that in many ways I have become the kind of doctor I never thought I’d be: impatient, occasionally indifferent, at times dismissive or paternalistic. Many of my colleagues are similarly struggling with the loss of their professional ideals.”
Links to the book these doctor has written are in my post https://silverinthebarn.wordpress.com/2014/09/03/epilepsy/
You may have been “with” me back when I posted this, I don’t remember. This particular doctor has a real problem with specialists in particular the dearth of General Practitioners.
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Outlier Babe
/ 2015/05/15I was not yet with you. However, you’d mentioned the elephant analogy post to me, I’d asked for the link, and then read it after you’d provided it. I was so focused then on Jen and what you were saying about the E/R assembly-line approach to her care that I’d not cared overmuch re: the other. Perhaps, too, I am lacking in adequate sympathy toward doctors? (Turnabout’s fair play!)
I’ve now gone back and read the WSJ link. The Journal blames the formation of HMOs on doctor greed? The evil that has sprung from those patient-impersonalizing money-making under-the-table payment-grabbing entities!
How does all this get fixed? (As the WSJ asks.) I don’t see it, with the country run by $ now more than it ever was.
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Cynthia Jobin
/ 2015/05/18❤
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Master of Something Yet
/ 2015/05/15Have you ever seen the movie “The Doctor” with William Hurt? Exactly that scenario. Successful but unfeeling doctor gets throat cancer and sees the system from the other side. I don’t know why they don’t implement a program for med students in which they are subjected to the same treatment as real patients.
Nurses are almost always the godsends (I’ve met a couple who weren’t). I guess because they are the ones who deal with the day to day care and get to know the patient as a whole person and not just a diagnosis.
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Silver in the Barn
/ 2015/05/16You know, I’d forgotten about that movie, but now that you mention it, a perfect example of what I’m talking about. The young interns I interfaced with during Jen’s time in ICU in a big Boston teaching hospital were smarter than whips and completely devoid of human interaction skills. They were young, I realized that, but still one expects more than awkward silences and no eye contact.
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Outlier Babe
/ 2015/05/25Part of this could be mended in an area where our whole culture falls down, and more so for women: We need to call people out on their inappropriate behavior when we or those we love are at the receiving end. It need not be rudely (although others sometimes perceive it as such), but the behavior should be identified and the person asked about it;
Dr. X.? You may not realize you haven’t looked at my daughter once. She is the patient, not I. Please address her directly, and include me. She is a person, and hears you, and has feelings.”
“Dr. Y.? You’re addressing yourself to me when your patient is my 65-year-old perfectly-able-minded mother standing next to me, and you have tried to communicate her personal medical information to me alone when she is not present. She never gave permission for this, and in fact, it violates Federal law.”
I admire the women who are now loudly calling out verbal sexual assaulters when there are other women around:
“THIS MAN I DON’T EVEN KNOW JUST SAID HE WANTS TO F#CK ME IN THE #SS’! SHOULD WE WOMEN HAVE TO PUT UP WITH THAT SH#T?!”
I think one should add:
“MEN, SHOULD YOUR SISTERS AND DAUGHTERS AND WIVES HAVE TO PUT UP WITH THIS SH#T?!”
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Outlier Babe
/ 2015/05/25Hi, MoSY. I’d stayed out ’cause I hadn’t seen the film (it’s on my list now), but just wanted to add how glad I am you pointed that out about nurses.
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Unreqwrited
/ 2015/05/17Dear Babe, I want to apologize for my absence and I am just now after over 2 months starting to get back to WP. I’ve been out of the loop from a herniated disc in my neck. I started to feel better about 2 weeks ago and then whammo, instant setback. But I digress.
Now it is a task trying to get caught up on what I have been missing. I don’t know where to start with you. You have such a fantastic way of turning difficult personal experiences into fine storytelling. Your humour comes shining through and I agree with the others that you are “Queen of the Captions” with the perfect photo. How DO you do that?
Regarding incompetent/sexist/arrogant doctors and other medical professionals, I’m with you on that. I’ve fired my share due to the same misgivings regarding inadequate diagnosis and gender bias. But thankfully that has been balanced by some excellent doctors. Back in the day, doctors used to be respected with godlike wonder, but that certainly is not warranted now (and never really was). I would shake my head like Victo, but it would hurt too much. And incidentally I have 3 of “them” in my extended family.
Glad to hear that you are feeling generally healthy these days. I hope you have found a good doctor now where you live, in case something more than unpleasant pops up again. Until I read your tales, I had never tallied a list of things that I had endured and I must say that I am also guilty for shrugging things off. But it takes time to take care of ourselves, and jobs get in the way due to time and stress. Sadly job stress is the biggest issue and my own doctor told me that I will not get healthier until I quit. He didn’t need to tell me that, but he said it to reinforce the issue. Enjoy your time to take care of yourself, it is precious.
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Outlier Babe
/ 2015/05/25Poor you, Stephanie. Pain, from any source, is the mastress. (Urban dict. has this as “male mistress”, but that is just stupid.) I wish you continued healing. As for stress relief–good luck! We most of us need that, I think!
I have only a wee something-or-other with my neck that means it hurts a bit–esp. when turned to the left–and I get a note from the doctor before surgery to remind anesthesiologists not to whack my head around like a cue ball. Even with my wee issue, I can get cranky on some days. Would not want worse.
I SHOULD enjoy my time. I don’t do enough enjoying because of the way my life goes. I’m trying to learn how to.
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Unreqwrited
/ 2015/05/25Oh Babe, I don’t tell my tale for sympathy. What is lacking is understanding and a little help from those physically around me, who seem to forget that I am not 100% and can’t function as if I there’s nothing wrong. I’m sure you can relate from what tales you have told. If I had broken my arm, it would be visible, but this, this is invisible. I hate reminding that I can’t lift the wash basket or such. You feel like a burden to others and that they notice that somehow you seem to manage most of the time without them. But little do they know my personal hell of trying to take a shower and get dressed, fix my hair and a million other little things that you take for granted when you have 2 able arms. Thankfully this is only temporary and this too shall pass.
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Outlier Babe
/ 2015/05/25I know you weren’t looking for sympathy, but you got it anyway.
While my sons were young, I never asked for help. That was my mistake. As the words I wrote in ’06 will show, my sons never knew I HAD any illnesses until I filed for divorce and my spouse tried saying I had nothing wrong. (Spoiler: That strategy failed, but he still won victory in his one-sided campaign to see who could triumph in evil.)
I cannot relate about feeling like a burden to others, because no one I was in a relationship with has ever nurtured me or cared for me (versus themselves) enough that I would feel I was imposing upon them in any way.
As you say, I CAN definitely relate to that invisibility of your ailment, though, and I have had limited use of my arms, as I shall blog about, so can relate to that, as well.
It is very good that your situation is temporary. (I just had an Edward Gorey moment, envisioning a cartoon in his style showing an array representing Life, in all its mess–babies and moms, suicide bombers, lovers kissing, police beating someone on the ground–you get the idea–with that same caption; i.e. “Thankfully, this is only temporary.”
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Unreqwrited
/ 2015/05/26Well I have to say, I am not sure how much they understood then and now, because if they did, THEY (read husband) would have done the laundry, not just lifted the basket. (Lately my daughter has driven me around when I wasn’t able). I did try to hide my illness from my kids when they were young, but it’s hard to do that when you are in the hospital. Through it all I still managed to teach them normal things like, swimming, skating, fishing. So to them, they really didn’t know unless it was time for a masking at the emerg ward.
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Outlier Babe
/ 2015/05/26You’re generous-minded. I have a VERY low opinion of most men’s empathy quotient for even the women they’re supposed to care about as equal life partners. The stereotype about men whining about every little cold symptom when they are sick, and expecting the home life to stop cold (tee-hee) while they are waited on is based on truth, as far as I can tell by what my women friends and acquaintances have reported of their experiences–and as far as my own have shown. But when women ail, we’re expected to perform every duty pretty much same as ever. If our men lift their little finger, their level of “help” (and WHY is it “help”, again, for those of us who work outside the home?) is magnified 100-fold in their minds.
F#ck that, really. Even though I prefer to be left alone when I’m sick, and I hate getting help unless I ask for it, I want the exception to that selfish perspective, at least–or no man at all. Which is part of why I’m alone.
But, Stephanie, perhaps you also need to spell things out for those around you. I think we women don’t do ourselves favors by keeping secrets like these, or being quiet with men like we can be. We don’t need to tough it out for the sake of our children. We can quietly say: “Thank you for lifting the basket, but you really need to do the laundry, hon. I’m not up to it.” And then walk away. HE would, if he had just a bad cold–wouldn’t he?
Same with the kids…
Just my opinion.
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Unreqwrited
/ 2015/05/26Ah yes, did that. Hence my facetious remark about “being a burden”. As for my kids, I didn’t want them to think their mommy was a sickie. I wanted to be seen as a “normal” mom, so they wouldn’t worry.
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Outlier Babe
/ 2015/05/26That is what I mean. I did the same thing. But I now believe that, in our long tradition of doing so, women do ourselves and our children a disservice. Let me try to better explain when I get to this in the series.
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Outlier Babe
/ 2015/05/17(1).kcccctuuui!!
(2) Margaret-Rose sends you her best wishes for a speedy recovery. Sent them. At least a week ago, but I’m only getting around to telling you now. I would apologize for the delay, but I don’t want to offer you a reciprocal spitting opportunity.
(3) Having already expressed sincere sympathy for your illness on your blog, not knowing at that time what it was causing your suffering I am unsure of the etiquette at this point:
(a) I am sorry that your boss is a literal pain in the neck.
(b) I wish you could quit your job on Monday and tell him so.
(her? I think you have used the male pronoun)
(c) That must have been a TREMENDOUS amount of pain, to knock you on your — like that. I have mucked up neck vertebra–special note from teacher to anesthesiologists saying “Don’t jack up Babe’s neck any worse while she’s snoring away.”–but not as bad as what it sounds like you went through/are still going through.
(d) I cook the cr#p out of everything that hurts. The hotter the better. As often as I can, while it’s hurting. Eff that ice sh#t.
(e) Baby-gentle slow-motion yoga might help.
(f) As if you haven’t already thought of and tried d and e. Acupuncture?
(4) Thank you for the compliment. Each of the posts in the series were progressively less popular/successful. As a result, I am disinclined to finish the series, but I made a commitment most particularly to one fellow blogger that I would do so. Therefore, I may just toss the rest of the original bits out unedited, sans illustrations, just to wrap it up.
My own best wishes are added to those of Margaret-Rose.
That’s your poem for the night.
🙂
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Unreqwrited
/ 2015/05/18Thank you both kindly for your best wishes I do appreciate them. I will have to go on over to visit Margaret-Rose soon as possible. I agree and also believe in cooking the crap out of what ails me. I am actually ahead of schedule for my repair, but it just isn’t happening as fast as I need. I have been through it once before, with the disc below, so I know the drill. This time the pain was also coupled with weakness and the loss of function of my arm, making typing (and everything else) difficult. Thankfully it was not my dominant arm or I would have been off work. I didn’t miss a day, only to take my mind off the pain. Yeah that’s me, Cleopatra, Queen of “De-Nile”. My boss isn’t so bad really, we get along great. It’s the upper management manifesto that makes it unbearable. But again I digress. Anyhoo, I for one look forward to the next installment and resolution of your series. True Grit I say, for Duking it out.
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Outlier Babe
/ 2015/05/25Loss of arm function, too? Lovely. Such a blessing, that, when you have nerve involvement. You HAVE been through it!
I of course understand working as a distraction from pain. Gets into a bad cycle, too, doesn’t it, when work aggravates the illness?
Re: This series–Ha! Some grit, with my ten-day absence.
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longchaps2
/ 2015/05/18Yikes. No, I mean YIKES! I’m at a little loss for words here. These doctors…they aren’t fit to treat animals. Seriously. You’re lucky you didn’t go blind, and we’re lucky too, cause then we wouldn’t be treated to this awesome blog. Please we gotta know how this resolves…the suspense..
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Outlier Babe
/ 2015/05/25A bit delayed (ahem!), but thanks for that “awesome blog”!
🙂 🙂
Hadn’t meant to leave the ‘suspense’ for so many days–sorry about that.
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Phil Taylor
/ 2015/05/21Wow! Lupus sucks! It’s a good thing you have a sense of humor about it.
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Outlier Babe
/ 2015/05/25I really didn’t do any laughing back then. Now, my symptoms from lupus are minor in comparison, and it is easier to laugh.
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