An Autocidal Life, Part 7: In Which Babe Is Saved By A 15-Minute Miracle


A mystery: SOLVED! Women treated: SHABBILY! Bad medicine, and worse: BAD HAIR!

(If you missed the beginning of our exciting and gross-but-still-riveting story, here it is. It won’t take you long to catch up.)

A Helpful Rheumatologist—And a Diagnosis!

Where Babe learns a name for what’s been happening.

The rheumatologist, Dr. R., had Babe hold out her arms and push against his hands with his hands.

She was surprised by how challenging that turned out to be.

.
She lay down while he lifted up her legs to see how far they stretched. (Even though her hips hurt, Babe’s legs stretched far. Babe is naturally flexible.) He checked out her feet.

Massaging Babys Feet

Just the Way His Mommy Had Taught Him

He pressed gently on different parts of her body to see if any other places hurt. She said “No”, or “That’s a little tender there.”

He felt Babe’s neck (she had trouble turning it to look behind her when she drove), and thumped and listened to her chest. He asked her if her chest had been hurting and whether she had shortness of breath, or trouble going up flights of stairs.

Dr. R. told Babe that she was in a lot of pain: That she had “fibromyalgia” and “pleurisy” and “pericarditis” (aches when poked, inflamed lungs, and an inflamed sac around the heart).

Babe has often been told she has a high pain tolerance.

When It Goes On Sale the Next Day

Witness Here Her Super-Human Lack of Tears or Trembling

The doctor spent the most time with her hands. He looked at her fingernails and the tiny blisters under the skin of her fingertips. He felt her knuckles, and looked at how her fingers bent. (Babe’s right pinkie looks a bit like the diagram below, and her ring finger was just starting to bend, too.)

Swan-Neck Finger Diagram

This Finger-Shape Is Called “Swan-Neck”. Guess Why?

My Swan-Neck Pinkie

How I Love Ya’, How I Love Ya–This Is MY Dear Ole’ Swannie.

Dr. R. asked Babe if she got tired around 2:00 p.m. (How did he know the EXACT TIME!?) She said yes.

He asked her if her hair had been falling out. She said it hadn’t, even though you could see two small bare spots over her right ear. (She wouldn’t admit to any man that she was going bald.)

He asked her if she bruised easily. She showed him her piebald legs.

Surprisingly, all of this–the (clothed) physical exam and the questions–happened quickly. After a total of only about 15 minutes in his office, Dr. R. told Babe that he suspected she had “systemic lupus erythmatosus”–also called “S.L.E.” or “lupus”, for short.

Whu-uh-uh??

Sigourney Puzzled

“Lupus, Doctor? Is that like cancer–something dangerous, growing inside me?”(This is exactly what I looked like when I was 30.)

This was 1986. Babe had never heard of lupus, and neither had anyone else she knew.

Except, it later turned out, a childhood friend of her sister, who had lupus. And Babe’s own mom, who’d kept her diagnosis to herself, while Babe had been going through all the fun she’d had. Good one, Mom! >:D


Lupus is named after the Latin word for “wolf”,
because it turns you into a monster.

(Okay, that’s not what the medical texts say,
but it makes more sense than their explanation.)

Amputate Sore Throat Insanity Wolf

Doctors Get Lupus, Too

The doctor prescribed an anti-inflammatory, Naproxen (500 mg./2x) to reduce the irritation from all the body battles, and a sort-of immune activity interruptor, Plaquenil (200 mg/2x), to help bring peace to the body battle world. He also told Babe to get lots of rest.

He ordered labwork which later showed that Babe’s “ANA” and “anti-DNA antibody” tests were positive. She had antibodies to her own DNA? THAT was very nasty to learn.

Twirling DNA Animated Gif

Am I Not Beautiful?

Scissors Animated Gif

It’s a FACT I Love Me Some GACT!*Guanine, Adenine, Cytosine, Thymine

Many autocidal conditions can cause a positive ANA test. Lupus is only one of them. A positive anti-DNA antibody test is more strongly indicative of lupus.

But you can have lupus symptoms and never show a positive result on any autocidal blood test. What does that mean? It means you have lupus, and diagnostic tests aren’t yet sensitive to your flavor of lupus.


Study Questions:
How can you even live with antibodies to your own DNA?

When to Ignore Your Doctor

Where Babe ignores her new doctor’s advice.

Babe was dumbfounded when, at her first visit, Dr. R. very firmly directed her NOT to read up on her disease. He said that it would only worry her unnecessarily.

Of course, Babe ignored this patronizing nonsense, and went to Private University’s Medical Library the very next day to try to gain some familiarity with lupus.

Woman Atop Book Pile Animated Gif

“Give me a B! Give me an O! Give me lots of O-K’s! Yaayyyy…Liberries!”

Study Questions:
Do you think Babe’s irritation was justified?

Quick Research Synopsis

Where Babe learns a little about lupus.

In one afternoon at the library, this is what Babe learned:

• That lupus rarely kills, but can make you tired and hurt a lot and feel like doo-doo a lot of the time.

Dung Beetle Sisyphus Animated Gif

At Least It’s Not Uphill

• That it may hit women more often, but may hit men more seriously.

• That many doctors today think of lupus as a disease that develops around age 30, but that doctors way-back-when knew that often lupus patients shared childhood characteristics:

– emaciation-like thinness
– easy bruising
– extreme clumsiness.

• That since the widespread use of steroids to treat lupus, some doctors have confused side effects of the drugs with symptoms of the disease (leading to the sadly ironic: “Uh-oh, her symptoms are getting worse—better up the dosage!”)

Prednisone Poster

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Side Effects Poster

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• That many doctors use a standard checklist to decide if a patient has lupus, but the list they use wasn’t intended for that.

Wrong Checklist

.

Their misuse limits the scope of what they look for, and causes many missed diagnoses.

(The checklist was developed to choose patients for research studies. It was designed to include only those patients who displayed multiple of select symptoms. It was never intended for clinical use in deciding which patients do and do not have lupus.)

Old-Timey Docs Did It Better?

Some of the old-timey, pre-widely-used-steroid-era doctors claimed that they could often diagnose lupus instantly, the minute some of their female patients walked into their office, just by looking at…

…their hair! What gave it away, you ask?

The way the hair in the front center would not fall evenly–one strand jacked out unevenly. How about that?

Mary McDonough Hair Strand 1

Mary McDonough, Actor With Lupus, As Child

Mary McDonough Hair Strand 2

Mary McDonough, Actor With Lupus, As Adult

My college ID card shows long hippie hair with one jacked-out strand like the second photo.

Women Are Not Mushrooms*, Lupus Docs!

Where Babe learns about the lupus “bible”.

What an education Babe had about doctors and their attitudes toward women with lupus.

Lupus causes damage by the body’s defenses attacking the body–any part of the body.

The original lupus “bible”, written by Edmund Dubois [you would think “doo-BWAH”, but he said it “doo-BOY”], is one honkin’ fat book–all those pages are needed in order to fit the host of ways each part of the body can be affected.

But when it comes to letting women know what to be aware of, Dr. Doo-BOY doo not need many words. He uses about seven of those hundreds of pages. Here is a one-line summary of what doctors should feel free to tell their female patients:

“Not much! We don’t want them to worry their pretty little heads off.”

Oo-BOY.

A Pretty Little HEad

It’s Too Late For This Female. One Thought Was All It Took.

The “justification” given for this is that the disease itself can cause psychological effects:

(1) through pain and discomfort;
(2) through stress; and
(3) through direct action (inflammation) of the brain;

and we don’t want to stress these poor little delicate ladies any further by letting the light of truth shine upon them, since stress aggravates the disease.

* “mushrooms”–Keep ’em in the dark, feed ’em sh#t.

Study Questions:
Isn’t this how doctors used to treat patients with cancer?
Or, is this a sexism thing?

Better! Thank You, Helpful Docs and Researchers!

Where Babe starts to feel better.

Just two weeks after beginning on the Plaquenil and Naproxen, Babe was in heaven.

(No, that doesn’t mean the lupus killed her, Carlos. o_O Think: WHO is writing this story? 🙄 ) It means she felt WAY better.

As the pain from the pleurisy and pericarditis continued to lessen over the next few weeks, Babe was amazed at the amount of pain she had been having and had gotten used to.

It was so wonderful to be almost pain-free! Bonus that she was no longer breathless climbing stairs, and she could hold onto the steering wheel.

Her life was back on track. <==(I SHOULD be ashamed of this link blatantly promoting an overlong totally-unrelated prior post of mine of which I happen to be fond)

Back On Track Path Through Trees
 

Part 8, In Which Babe Plus Babe Equals Trouble

FOODENDUM

Dr. R. comes across as a jerk. He was the complete opposite. He was personable and warm. I could tell he cared about me. However: It’s a d#mned good thing I ignored his advice, because I specifically asked him:

“Are there any dietary restrictions that go along with this?”

“No, you don’t need to worry about that.”

And at the library that day, I learned he was WRONG! It turns out that there WAS food that I should have been avoiding, and that, if eaten in massive amounts, can induce lupus symptoms in even non-lupus folk: Alfalfa sprouts! They contain an amino acid which can trigger lupus symptoms. Back then, this wasn’t widely known even “in the field”, but this layperson with access to a top medical library at a top medical institution learned it by doing her research–I was reading stuff from the 1940’s and 50’s, and stuff just released in whatever-the-month-it-was 1986.

As a (now) sunny southern Cal gal, guess what I’d been topping off my whole-grain turkey-and-‘cado sandwiches with? 😮

Part 8, In Which Babe Plus Babe Equals Trouble


 

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47 Comments

  1. “pericarditis” Finally a word I recognise. (Youngest Son had it a couple of years ago.)

    Gosh, is there nothing quite like an “a-ha” moment?

    I plan to read your shameless plug of a post but it is very loooooong. I may need a trip on the Trans-Siberian railway to find enough peace time to read it. Or I’ll read it in Express Train bursts.

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    • Please feel no obligation. I would not, were the shoes and feet reversed. I feel about writing thusly: All writers wish all their writing to be read. Thus, we all proffer it. But no writers should fairly expect any acquaintances, no matter how close, to feel under any obligation to read any piece at all. We should be grateful for every reader and piece read as if we’ve found water while crossing a desert. Too be for us our thirst is unquenchable.

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      • Oh, I want to read it (just from my quick once over) but just now I need to return to S.H.I.E.L.D. I’m one and a half episodes from the end of Season 2. It’s all getting a tad exciting. (Just had to pause so I could catch up on Babe’s The Story So Far. 🙂 )

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    • Oh, and I found it more fun to watch the video with the sound off and sing “A sailor went to sea, sea, sea…”

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    • How did your son wind up with pericarditis? Viral infection?

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      • We don’t really know. We suspect so.

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        • Poor thing. I remember the pain. I find it so interesting that people say one doesn’t remember pain. I remember many of my pains extremely well: My labor (it is such bullsh#t that kidney stones are worse–I get stones constantly, and my labor had them beat by a mile), my pericarditis, my broken ribs, my nerve pain–oh! Whoops–we’re not up to that yet.
          😉
          Sorry your son had to go through that. 😦

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          • It was hard to watch as a parent. Helpless even. We ended up in Casualty in the wee hours of the morning when he woke up crying and crying. Took many, many hours of tests and waiting to find out what was wrong. He’s made a full recovery but these things always make you grateful it’s a temporary thing. I don’t know how parents deal with a child with ongoing health issues. 😦

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            • I just saw this reply now–and I don’t know how they do it, either. When my one son was rushed to the NICU at a week old–when my other was rushed at four months old–when the first got kidney-involved HSP–I don’t see how parents live, literally, with their hearts ALWAYS in their mouths, and the feeling of helplessness as they see their child in pain. I would think think their hearts would finally literally break.

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  2. Babe was dumbfounded when, at her first visit, Dr. R. very firmly directed her NOT to read up on her disease. He said that it would only worry her unnecessarily.

    Huh?

    My first thought was WTF…..

    Then I got thinking about the neighbors who bought dynamite to take a boulder out of their field only to develop a dynamite addiction.

    Then I got thinking about all the people who came into the bank where my wife used to be employed, asking for a loan advance on the Nigerian lottery they won but don’t remember entering….

    Then I got thinking about all the crank-advice and criminal exploitation of human suffering.

    Maybe the doctor figured that he didn’t have to worry about anyone smart enough to ignore his advice.

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    • I forgot to include the friggin’ MOST important part of that aspect of the post!

      (I’ve since edited this comment and stuck the content–about the need to avoid alfafa sprouts–in the post’s footnote).

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  3. Sorry, it all sounds beastly. Hm, as in ‘wolf’.

    I know all about the side effects of Predni(so)lone. (UK name for the life saver) I had nephrotic syndrome, another of the auto-immune conditions; that one is prepared kill you, though. I’d be dead without steroids.

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    • I’m so sorry! About the kidney trouble, AND about the friggin’ prednisone side effects.
      😦
      My point, though, is that doctors who face patients initially diagnosed with lupus are IMMEDIATELY starting them on prednisone, and only viewing Plaquenil as an adjunct, or a later option, if the steroid doesn’t adequately address symptoms.

      It is my opinion that the steroid’s effects stress the lupus patient and her/his systems, and this can contribute to kidney issues. There’s your nephrotic syndrome which could have been avoided.

      My doctor, who was a mucky-muck in rheumatological circles, didn’t go in that direction. Thank God. I have always said that I would never take steroids unless I was under immediate threat of death. (I recently broke that rule–what pain will make us do 😦 )

      Have my kidneys been wonky? Indeed they have. The f#cking things have hurt me and their labs have come back screwy, and they are chronically infected–blah-de-dee-blah-blah. But: They’ve never gone REALLY bad, in almost 30 years since my diagnosis (knock on my head!).

      I believe, besides my great diet and decent exercise, I owe it to Dr. R. (and me, and a later Dr. A.) and the choice of no F#CKING steroids!

      And mere chance. I feel for those lupus people who have it so much worse than I, and, steroids or no, are just d#mned with the worst this thing can throw at you. If I were one, I’m sure I’d say “Just make it all STOP! Give me every drug you have!”

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  4. Oh Babe, words fail me whenever I read a new post from you especially since you decided to delve into this pretty ‘interesting’ condition! Knowledge is power and I love that you did take some time out to go do a thorough research on Lupus as against what the doctor and ‘Du-BWAH ordered! You do know you’re unbelievable doncha?! 😂😂

    If stress is one of many symptoms that can aggravate a Lupus Patient, then am guessing the docrors are just being careful not to cause for a sufferer to become panic-stricken! A lotta folks regardless of gender, can tend to become worry-warts! Not everyone’s well equipped to handle certain information and I guess for those, ignorance oughta be bliss; which is more than I can say for you Babe! By braving all to go learn more ’bout your condition, its like a stand-off between you ‘two’; like you’re handing and issuing out a challenge that clearly says ‘Lupus, if you don’t kill me, you best be on the run cause am sooo on to you and am gonna come up tops’! ….Aannd you shall Phoenix, you’ll see! Keep ’em pretty fingers of yours crossed and see how you continually beat this! 💪😉😄

    Good thing the pain’s under control! As individuals, we never really know what latent abilities and powers we possess, till we face certain challenges and we think…’ Who am I’? Or ‘ Wherever did that come from’? 😊😃

    Thank you sooo much Babe, as I always say; you Sweetness are an absoolute force of nature! Lupus gat nada on you! It totally lost the battle when it chose you! Love ya TONS! 😁❤❤❤

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  5. What a relief to finally have a diagnosis and treatment that worked! And the sense to educate yourself about lupus in spite of the doctor, because you know, a little knowledge is a dangerous thing 😉 In this regard it was a happy-endum 🙂 I don’t know how you functioned with all those conditions, you must have been a walking zombie 😦 Willpower only goes so far, it is a wonder how you just didn’t fall over and not get up. And after the diagnosis you must have been uplifted to know that it was NOT in your head. Lupus is real and it was not your doing. Shame on your mother too, for not divulging that condition. That’s just wrong for not telling her children that they could have inherited medical issues.

    And about your current shortness of breath, check your hemoglobin. No wheezing invovled. I suffered from this needlessly because of a specialist who told me that I “didn’t have a problem”. Meanwhile I was hovering near the level needing a transfusion. Going shopping was like running a marathon, I would come home and collapse. Yes I fired that doctor, but it took a long while (years) before I was literally dragged to a new caring specialist (OBGYN) who fixed “the problem” and continues to monitor. It is a amazing how low you can go before you seek help and sometimes it comes to you and you don’t want it, because your trust has evapourated. But this experience restored enough faith to be able to face my next unexpected chapter, and the resulting specialist (and surgical team) who were also outstanding. Another happy-endum.

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    • I was working the typical I.T. professional’s zillion-hour workweeks, plus restoring our L.A. Craftsman home, plus doing all the cooking, cleaning, and laundry–back then. I have no idea, either, how I managed to do all that with all that pain.
      😥

      (2) I understand what you say about relief when you finally get the answer about something–even if it is to find out you have a disease. Because at least and at last you FINALLY know what it is! It all makes SENSE now! I did get some of that, yes. But I didn’t immediately jump to the conclusion “my rages and nightmares will stop because they’re part of this”. I wasn’t aware of the CNS (central nervous system) connection until after I visited the library and read or skimmed a good part of doo-BOYS’s book. No..STILL no lightbulb. Call me slow. I plead CNS brain involvement.
      o_O

      (3) This is…really difficult to say. Here goes: I never told my own children I had lupus. Not when they were young. They never knew Mommy had any chronic illness(es. That will be mentioned in this series. Yes: I know now that was a huge mistake, and not for the genetic reason (my kids knew by the time they were in their mid-teens). Regarding my mom on that front, she probably did not know lupus had a genetic component. She did not know much about it because she was very good at shutting her ears to bad news. When she received her diagnosis, she told me, she never went back to the doctor who gave it to her.

      (4) That is a fantastic idea about the hemoglobin–esp. since I’ve been anemic before and anemic and lupus can be buddies. But I am not now–just had two surgeries in two months with bloods for both, and labs were happy.

      (5) So there was nothing wrong with you either, eh? You irritating female. You should have just taken the doctor’s word for it–s/he was a specialist, for heaven’s sake!–and curled up in a corner somewhere until you shriveled into a pale, dried semblance of your former self and blew away. Yet you, or someone who cared about you, challenged the medical establishment, and now, here you are: A verbal thorn in Medicine’s backside, criticizing their expertise openly (and a sickly specimen, besides, wasting valuable resources!).

      You are foolish to make waves. When the New 1% Order is established, do you not know that it is the taller grasses who will first feel the blade?

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      • I don’t think young children understand chronic disease, and I didn’t tell mine when they were really young either. But certainly by the time they were teenagers they were aware of medical issues. But I tried to downplay them as to not worry them unnecessarily about if mommy would die from not breathing and such. So it is a fine line, but to say nothing at all is wrong.

        My family doctor and specialist ganged up on me. I kept rescheduling the appointment and avoiding the preliminary tests such as histogram and ultrasound because I couldn’t get a break from the menorrhagia. After half a year of this game eventually they said, “skip the tests, just get your butt here”. The first specialist never even took a blood test or examined me, so what did he know? That’s why I fired him, but didn’t tell my family doctor. Never went back, so my family doc finally realized that I was not getting treated.

        Eventually I had more blood work done to check my thyroid, because it was overdue (yes, I have hypothyroid as well). He decided to do other tests and found the low hemoglobin and set me up with a different specialist (female). Still I was not convinced, I had fired a female OBGYN all those years ago when I was pregnant, so gender didn’t immediately equal hope. I had done all the research, I knew what I needed, but was afraid of being dismissed again.

        In the end, the treatment was exactly as I had determined but it took many tests, iron pills and a routine procedure to get me back to the land of the living. Until then, I really thought (and sometimes wished) I would just disintegrate away slowly and die, because this wasn’t living. But, I survived, in spite of myself!

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        • “You were afraid of being dismissed again.” I wonder: Do men patients feel like that–the far fewer times they face these situations? I think we women are quadruple-d#mned: Child-bearing ability-related ills, autoimmunity ills (more common in women), gender discrimination ills, and our gender socialization ills.

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          • I was really angry about that reality when I was a young woman. I internalized it and became very depressed. And then I learned I was pregnant. The next doctor I fired after the female OBGYN was the shrink (male), who was the head of the psych ward at our main hospital. I wasn’t crazy. The world was.

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            • I admire you. It took a great amount of strength and confidence to plow through everything you have. I don’t mean only the physical health issues, but the barriers to get help with them, as well. It is impressive that you have a successful marriage and family and career.. And are wicked funny.

              Plus you’ve picked up a few words here and there.

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            • Oh Babe, thanks for that. But really I can’t hold a candle to you. You are THE BABE and you inspire me. And I’m not being funny when I say that 😉

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            • Thank you, Stephanie. X X O O
              I can’t decide whether to shuffle my feet and look down, or to strut and crow. I’ll make up my mind once I’m finished with this current eating-well-past-the-point-of-satisfaction-followed-by-too-much-chocolate binge I’m indulging in since learning about all the weight I’ve gained.

              Since skin is elastic, my theory is that rapid over-eating will cause it to suddenly expand, and then even more suddenly contract, and: ZAP!! There goes all the fat from those fat cells, and even some of the cells themcells, squozen into the bloodstream like so much melted butter–circulating round and round like the butter in “Little Child-of-Beautiful-Bronze-Tone Sambo”.

              Ooooo!!! PANcakes!!
              😀

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        • is there anyone here besides me that feels like they've fallen down alice's rabbit hole ?everything is curiouser and cus.rureoi..up is down ,big is small, blk is half white .HI DOH is in complete control of all pertinent evidence and nobody in the mmedia ..

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          • Lots of us, Rosie…lots of us. (Congrats: I haven’t even been on this blog to respond to anyone’s comments for over a year–been kinda distracted with life–but you get the honor (?). I happen to be trying to finish these lupus pieces and maybe turn them into a mini-book, and your remark snagged my eye. Hope you are healthy–or at least hangin’ in and hangin’ on : )

            –O. Babe

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        • It’s about time someone wrote about this.

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  6. The bit about the one ‘jacked-out” strand of hair is so troubling to me. Not that in itself but that doctors in the good old days were so much better at analyzing the patient as a whole human being….really looking at them….noticing things that might be out of the ordinary. These days they rarely look at you closely as they’re so busy filling in the computer forms. I have an inherent distrust of the specialist – the Indian fable of multiple people examining the elephant springs to mind again.

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    • That and the knowledge about lupus children both struck me at the time exactly as you are saying, Barbara: That doctors had lost touch with patients–and that was thirty years ago!

      I will say that Dr. R. had NOT lost this: To do a full exam and set of questions in 15 minutes and diagnose systemic lupus? That man knew how to observe. For all you and I know, he may even have subconsciously gotten into the habit of noticing subtleties like jacked-out hair, and these assisted him in steering his diagnostic queries.

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  7. The work and research on this pos shows….love it.

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    • Whew! FINALLY getting back here to say “Thank you so much!” I took a quick peek over at your place–I see my friend Aquileana has beaten me to it there as well–I don’t think there’s a blog she doesn’t get to, like the bees still remaining, she buzzes all over.
      🙂
      A fellow science buff : ) Your blog has a good look, and your writing is crystal-clear and pleasant to read. I didn’t hit your About page (I’m running out of steam) but wonder–are/were you a writer for your career?

      I waste away half my morning sucking down Science Daily. Really dumb, but I’m an addict. I know you can relate.

      Thank you so much for visiting, and commenting. I have fantastic smart readers over here, and a science fan would be a wonderful addition (shameless boot-licking 😛 ). But I have nerve, because I am not following anyone ELSE’s blogs now–I’m seriously maxed out. If you do have a particular piece you are especially proud of sometime, by all means, let me know and I’ll scoot over with pleasure.
      🙂

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      • Well thank you so very much for such a lovely & comprehensive comment. We will keep you in mind!! The girls are learning and writing….they love science.

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    • Oh! I see you have ALREADY followed! THANK YOU!! I am so happy! You know what I said about my other readers? ForGET those losers–YOU are my favorite.
      😉

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  8. Amazing stuff, Babe. The medical field vs. Babe, and Babe is the wiser. That’s both good for you and bad for you and sad for them and the world. You know? Yeah, I know you know. This is your story from 1986. Wow.

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    • Thanks, Mark. It is sad. I think it’s still going on. I have a friend with brain cancer who’s in a support group in the middle of one of the biggest cities in the country with the most advanced medical institutions in the country whose members are getting bleeding edge care, and yet, because I read Science Daily in the hopeless-addict way I do, I’ve been able to provide his group with data that has been of immediate practical use to them. This should not be–that some boob layperson sittin’ here reading a daily abstract of abstracts should get vital news to them ahead of their physicians.

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  9. Having read through your chronicle with great interest, I was also struck by your gift for writing on such a serious and afflicting condition. My son was diagnosed with ALL just before he was 3 (Graham’s Story), and recently was hospitalized on a business trip to San Diego suffering from incredible bowel pain (he’s now 35). Diverticulitis was found, but no definitive diagnosis. Surgery is indicated on his large intestine. I’ve spent a couple weeks with him and his wife in the DC area for support. PICC lines, super diligence re sanitized surfaces (which is not habitual on their part), and a big change in diet have been part of the regimen. He’s worried he won’t be able to participate in a trip to Ireland that was a year in the planning. I’m worried about far more than a trip. I’m always of the opinion that more, not less, knowledge about a condition is far better. I’m also wondering if a Doctor of Osteopathy might not be more inclined to give a more holistic approach/background to diagnostics. But it could be like that old saying about lawyers, if their lips are moving …

    I hope you will find the energy to publish your story, not just post it.

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  10. Skip, I hope everything turns out well for Graham! Even when children are adults, our worries stay the same, and I know that when you have a child with a health crisis in his past (I had read Graham’s Story, and you and I had written to each other about this), every future health scare brings your heart to your throat.

    Please post on your site or write here to let me/us all know how this turns out for him!

    My sister, who also has inflammatory issues, and is a sharp cookie, believes in osteopaths and in fact had suggested this recent for another acquaintance of mine. Presently, for me, my health is good because I do not work more than 3 or 4 hours a day. That has proven the key distinction between healthy and unhealthy Babe. I have no horror show events like I did in the past–thank God. There are only tiny surprises–even amusing ones–which I shall write about at the end of the series.

    As for your compliments, I am truly honored when someone with your gift for writing says such things to me. I HAVE been thinking I would like to publish this series. I don’t know where or how, but I think there might be some interest somewhere. My understanding is that today’s agents and publishers are interested only in those who have a well-established social media presence: Facebook, Google+, Twitter and the like. I do none of these, and have no intention of doing so, so that could be a problem. I’ll worry about it once I finish the series.

    I also think I want illustrations, and since I don’t want to deal with copyright, I think I shall just try to see how long it would take me to toss off some of my own line drawings based upon the current illustrations. Those ought to suffice.

    Thank you so much again, Skip, and again, my best wishes for Graham’s quick proper diagnosis and recovery.

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  11. Based on the patronizing ‘pat on the hand’ dismissals of some of your physicians, might I hope this was happening ‘way back in the day’ years ago and that modern doctors wouldn’t be so demeaning of female patients?

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    • I see you found out later this all WAS years back. However: As of 2011 (I think?), I was still being plenty demeaned and discounted SPECIFICALLY because of my gender. I hope I remember to get to that–since the ending isn’t written yet, I may forget.

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