You will find here, as you skim,No kidney failures, nothing grim;This is a case of “lupus light”:No rushing to E.R.s at night.
And yet, with just a gentle brush,
Of lupus life and lupus touch,
Please understand why we go wild,
If others call our problems “mild”.
This is that last
nerve you’re
always
hearing
about.
The one
lupus gets on.You can tell it’s a
lupus nerve. See the sore feet,
weak little invisible
arms, only one eye
able to open, and
obvious hair loss?
Poor little lupie.
Lupus is called an “autoimmune” disease because the immune system, which should attack the body’s bad guys, attacks the “self” instead (auto = self).
Babe, the woman featured in this history, really dislikes this term.
Immune means protected. To Babe, autoimmune sounds like something that protects the self, instead of hurting it. This history uses her preferred term AUTOCIDAL: The body’s defenses are trying to kill the body!
Autocidal is sometimes used to mean suicide by car, but it hasn’t been used very often for that. I would really like to start a movement to repurpose autocidal for lupus. And: Crohn’s disease, multiple sclerosis, Sjogrens…all the fun ways our own bodies try to MURDER us.
Lupus is one of the “invisible” diseases:
No One Sees What’s Happening Beneath the Handy Shell
You can look perfectly fine and healthy to others when you are having all sorts of painful, uncomfortable, or just embarrassing or creepy symptoms.
The Beginning
Where perhaps things began to go awry.
Living in Columbus, Ohio in 1979, Babe had felt quite healthy. She took walks almost daily in a nearby nature preserve, and every night after dinner, she and her partner took an after-dinner walk lasting over an hour. In Babe’s last year in Ohio, she had added running from 3-5 miles a day after work. (All right, it was mostly a jog, and usually closer to the 3 than the 5. Jeesh!)
There were some niggling problems during those years:
• Babe kept having infections which caused bleeding into her urine.
• She kept having severe weeks-long bouts of bronchitis.
• Every night after running, one of her knees would swell to twice its size.
The Bruise
Where Babe noticed a teeny-tiny nothing.
It was 1981. Babe had just moved to Los Angeles and found a really nice apartment in Mar Vista (“Sea View”). There was a sunny courtyard with a beautiful clean pool, and glorious purple morning glories just outside her window.
There was the lovely whooshing sound of the nearby ocean. (Even after Babe found out that it was the whooshing sound of the nearby freeway, she pretended it was the ocean.)
On her first day in the new apartment, she lay down on her new bed to relax. Hmmm…that was odd: The back of her head hurt like there was a large bruise on it, on one side. She didn’t remember bruising it. Oh, well, it would go away.
It didn’t, but she got used to it. It made her feel like The Princess and The Pea.
Study Questions:
Why is the bruise on only one side?
Why not just sleep on the other side?
Can cars really sound like the ocean?
Part 2, In Which Babe Gets Some!
ADDENDUM
This is lazily re-posted content first posted nine years ago on my first site written in Yahoo Site Builder. Haven’t reviewed it, or planned where I’ll stop between or after the old sections–just going for it. Don’t even know how the story will end. It may simply peter out.
Part 2, In Which Babe Gets Some!
The Last Half 
Paul
/ 2015/04/30Whoo. That’s hard to take OB. Thank you for sharing.
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Paul
/ 2015/04/30HUGS
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Outlier Babe
/ 2015/04/30Paul, I SWEAR I answered this immediately, but WP ate the response. First, you are welcome, which I forgot to say the first time. Second, if you–especially you–think THIS little nothing stuff in the first part is hard to take, I think my readers will drop away quickly (if they haven’t already due to my long silences), which would be sad. We shall see.
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Paul
/ 2015/04/30The thing about my medical situation OB is that it was identified almost from the beginning and although the problems multiplied like a row of dominoes falling, there was never a time when i didn’t know what was happening – it may have been serious (or deadly)but it had a twisted logic – all the pieces fit together like a jigsaw. My understanding of Lupus is that there is no logic and there is no way to know what will happen next and it can involve any body part that can be affected any way.
You have had it very hard OB.
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Outlier Babe
/ 2015/04/30I agree that I and other lupies have it hard in the sometimes overlong search for a diagnosis, and the unfortunate interactions with physicians that often occur up until that time, but I disagree that I have had it very hard if you mean due to my lupus. I often feel it was very hard in the past, but for many years now I am the healthiest person I know of who has S.L.E.. Or, perhaps, doesn’t have it, depending upon the doctor, the test results, the symptoms, and whether the symptoms are present at the appt but gone but still believed.
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Outlier Babe
/ 2015/04/30And except for…oh…two years in the early 2000’s, I don’t think I would have traded places with you, Paul. I’m a total needle weenie. I don’t cringe outwardly or anything, but inside, I’m screaming like a banshee.
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Victo Dolore
/ 2015/04/30Autocidal is a much, much better term for SLE.
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Outlier Babe
/ 2015/04/30THANK you, Victo! It is a fantastic feeling to have the stamp of approval from a physician, and especially from you!
❤
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Victo Dolore
/ 2015/04/30Now, I am curious what you have been writing about that you are afraid to post…
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Outlier Babe
/ 2015/04/30I”m ALWAYS afraid to post. It is just that sometimes the fear paralyzes me,
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Outlier Babe
/ 2015/04/30I wrote a draft of piece about maltodextrin, and re-edited an old piece similar to the Oak Lawn one (too similar) on my next home, in Chicago. I wrote a piece about the history of my drinking, and decided it was boring, except for the ending. I started a piece based on excerpts from Reza Aslan’s book on Jesus. Many starts because I feared each piece not good enough.
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Victo Dolore
/ 2015/04/30I don’t think you have to worry about not being good enough. Not that it will matter what I say, per se. Such is the nature of self doubt….
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Outlier Babe
/ 2015/04/30(thank you. : )
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Maggie Wilson
/ 2015/04/30I don’t mean to argue, but I agree with Paul. You, Babe, have had it hard. Harder than most of the people I know. Sure, we all have our burdens and challenges. But you, Babe, have been dealt a boatload. You are a marvel and you amaze me and I am happy to know you, blog friend. I thank you for your humour and your intelligence. And I wish you godspeed with whatever issue is your current burden.
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Outlier Babe
/ 2015/04/30Oh, Maggie, I love your high opinion of me–thank you!–but no one can feel more sorry for me than I already do!
😀
Which is silly, because that is based upon looking backward.
I took Paul to be referring only to the lupus. But if you do add all my life’s events together, past and ongoing, then I’ll agree that it is all a bit tiresome.
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Maggie Wilson
/ 2015/04/30“Which is silly, because that is based upon looking backward” – an interesting way of looking at it, you should pardon the pun. That’s what the Eastern religions are all about, aren’t they? Considering only the present.
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Outlier Babe
/ 2015/04/30That’s what the current rage “mindfulness” is all about. Without labelling it, it’s what my therapist gave me to do back in ’06 to walk myself to functionality in the midst of depression. Great for an Aspie who already talks to herself. I talk my way through simple actions (aloud or silently): “Now I’m heating water for tea. Now I’m putting in the tea. I’m adding sweetener. I’m sitting down. I feel the chairpad under me.”
Focusing just on each moment as an individual slice of life.
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Silver in the Barn
/ 2015/04/30Listen to Maggie, Babe.
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Silver in the Barn
/ 2015/04/30When terrified to hit that publish button, Babe, try to remember you are surrounded by readers who genuinely care about you. I’m very interested, by the way, in learning more about autoimmune diseases, or autocidal, as you dub them. Don’t peter out!
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Outlier Babe
/ 2015/04/30I won’t peter out before the original end, but that won’t teach you about autocidal diseases in total–just my experiences specifically. I have learned a tiny bit more lately about the big picture, but it’s not in any shape for posting–maybe…
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Outlier Babe
/ 2015/04/30Shoot: And thank you–again!
❤
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markbialczak
/ 2015/04/30I have a very high opinion about you, Babe, about your writing, about how you present yourself and your many layers of life in your writing.
You should never have doubts about pushing the publish button. I think there are more me’s out there in Bloggyville than you would believe.
My baby sister, 10 years younger than me, lives with lupus. You are going to teach me a whole hell of a lot about what she’s living with, stuff she doesn’t share. You’ll keep pushing publish for me and people like me and for yourself, right, Babe?
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Outlier Babe
/ 2015/04/30Oh, Mark. I’m sorry about your sister. I had only a few bad years from the lupus. It’s mostly in the background now. But if you can learn anything from my experiences that will help you understand what any of hers have been like, that will please me a great deal.
Thank you, of course, for the compliments!
❤
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markbialczak
/ 2015/04/30I know little things: avoid the sun more than ever, losing some hair, facial blotches. But it comes and goes, and she really doesn’t like to talk about it. I’m glad yours is in the background, mostly, and hope it stays there.
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Outlier Babe
/ 2015/04/30Thank you.
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Yemie
/ 2015/05/01Wow! Such a grim discovery😔 and eye-opener 👀 this is! You’re brave Babe, takes a lotta courage to talk ’bout this condition in the way that you do! You’ll beat this Sweets and I’ll be praying and rooting for ya all the way to the finished line, however you do decide to tackle this ‘race’, or ‘marathon’! Whether by crawling, walking 🚶, jogging, running 🏃or even hopping, leaping, flying ✈or soaring! Jeesh! 🙉👿
Bottomline…….I’ll be here and you’d come out victorious and better for it too, by His absolute grace IJN; AMEN! 🙏 👭❤
Way to go gurl, love ya tons; MWAH! 😂👍
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Outlier Babe
/ 2015/05/01Thank you for thinking me brave, Yemi, but it is not courage, it is that I am not a private person. I am a storyteller–I love telling stories–and the subject I am most familiar with is ME. Do you think THAT is why I was given the Chinese curse of an interesting life? A blessing in disguise?
😛
Thank you very much, too, for your wish and prayer for victory. Today, either I have conquered my illnesses, or they have beaten me into submission (you’ll see what I mean, if these posts don’t meander off into nowhere), so things are very rarely bad at all.
🙂
And am loving you tons back.
❤
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Almost Iowa
/ 2015/05/01They put that publish button there for a reason. Never be afraid to use it. Hell, you could write a post with nothing but the ‘x’ key and your humanity and humor would still shine through.
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Outlier Babe
/ 2015/05/01Greg, that comment almost struck me speechless. It would have, were I capable of that state. I can’t tell you how much it means to me to have a writer of your ability, and sensibilities, say that to me. Thank you.
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Almost Iowa
/ 2015/05/01I will take that as my cue to say, “Aw shucks, I’m just a countryfied city-boy who is still struggling with basic grammar.”
I think you’re a pretty damned good writer too.
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Outlier Babe
/ 2015/05/02(mumbling: “…Where’s that emoticon with the hair sticking straight up?…)
😮
❤
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Almost Iowa
/ 2015/05/01Here is a little autoimmune story to hopefully cheer you up.
My brother has an autoimmune condition called Alopecia areata. It occurs when you immune system attacks your hair. Most of the time, he is completely bald – but that is just the beginning. He loses his eyebrows, the little hairs on the arms – everything and when it grows back, it comes back in splotches.
Other than that, my brother digs up land mines and is an extremely fast runner.
A few years ago, soon after returning from deployment in Iraq, he signed up for a 10K run. He worried that he might be slow – because you know, they discourage running through the villages of southern Iraq.
So when the gun went off, he was pleasantly surprised to hold the lead for most of the race. He faded at the very end and was past by a handful of runners. As the lead runners were milling around near the finish line, my brother removed his cap to reveal a few patches of hair and turning to the pack who worked so hard to catch him, said, “Man, this chemo is tearing me up, I didn’t think I could finish.”
You could almost hear their egos deflate…..
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Outlier Babe
/ 2015/05/01I bet he got his runner’s high immediately at the starting gun when he thought of that line and the sweet joy of saying it at the finish. No wonder he won. Wicked funny!
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Master of Something Yet
/ 2015/05/04I’m a bit behind so Part 2 had landed before I got to Part 1. Read Part 1, went and read Part 2 before commenting on Part 1 because… oh, because I like to have all the information so I don’t end up looking like an idiot, I suppose.
In the end, I’m only going to say what I would have anyway and as others have before me – Don’t be afraid of that Publish button. If people don’t like it or are embarrassed you’ll never know because they tend not to comment if they’re uncomfortable about something. And if they do and you don’t like their comment, you can always delete it. (Ooh, that’s possibly naughty but hey it’s YOUR blog, right? Do what you want.)
And this doesn’t have to be ‘informational’ in a science-y way about lupus. It’s far more interesting and educational to hear your experience of the disease.
Now I’m off to drop a comment on Part 2.
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Outlier Babe
/ 2015/05/07I meant to answer this t’other day and finally noticed I hadn’t.
That IS naughty, to delete comments just because you don’t like them! What a funny idea–would have never occurred to me! I am such a Caspar Milquetoast, still, in so many ways. Of course I have the right to remove comments I find objectionable. I wouldn’t though. The only comments I have ever considered removing, besides spam, are those from people whose ideology was fairly opposite my own, and they mistook mine to match theirs (e.g. anti-family-planning folks or all-must-believe-Jesus-is-God’s-son folks).
Re: Reading a personal story vs. cold hard facts, we all prefer stories. Children learn history better when the facts are presented in story form. I certainly prefer my history presented like this. WAY cooler. Whether MY story will make the grade will only be determined by how it ends, and that I haven’t yet written. So exciting! (Translation: Oh, cr#p! I really ought to DO something about that.)
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Aquileana
/ 2015/05/08A tough disease as some of the symptoms might be invisible as you said above… You are very brave to put it all down in words, and you are raising awareness also… So thanks for sharing and I wish you all the best. Happy weekend ahead to you. Aquileana 😀
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Outlier Babe
/ 2015/05/08Thank you, Aquileana. I appreciate your good wishes!
🙂
A happy weekend back to you!
🙂 🙂
–O. Babe
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RR
/ 2015/05/13I empathize. And whole-heartedly, with sword and shield (okay, insulin syringe and glucometer), stand behind you and AUTOCIDAL. Throw (Type 1) Diabetes in the invisible pot too.
Continue to be brave. Your fear is warranted but only in a “whenever we post our thoughts/feelings we allow ourselves to be vulnerable, blah, blah, blah” kind of way. 😉 I personally enjoy your writing very much, so even if only for me (and many others, obviously!!) cast fear aside and post on!
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Outlier Babe
/ 2015/05/13Thank you, Rebecca! You are right about diabetes being one of the Invisible Ailments, too–hadn’t thought of that!
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RR
/ 2015/05/13I think it is because diabetes is varied and a too generalized term for very different diseases – for example, I am opposed to Type 1 and Type 2 being under the same Diabetes umbrella. Anyways. Soap box away…for now. 😉
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Outlier Babe
/ 2015/05/13Never thought about THAT either. Is the difference even more objectionable now that there are thousands of type II’s created primarily via sedentary and gluttonous lifestyles? (Or so it is thought, although there is some research indicating effects of specific additives to the diet–corn syrup, artificial sweeteners, what have you.) My mom was one of these, by the way. When doctors ask “Do/Did any of your close relatives have diabetes?”, the answer used to have significance–even if type II–but I doubt this is still the case.
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RR
/ 2015/05/13Type 1s are born unable to produce insulin (or produce such low levels they require it from another source), usually diagnosed quite young (ish), their pancreas is malfunctioning vs. Type 2s who develope it later in life, usually as a result of several factors. It is difficult to create a grounds for understanding the differences when the disease is so difficult to navigate through an explanation. Lol.
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Outlier Babe
/ 2015/05/13I understood the differences you listed. What I meant was, previously, there were far fewer Type 2s, and fewer were likely linked to poor personal habits, versus, say, someone whose lupus inflames their pancreas and screws with the Langerhans vacation paradise. But I understand what you’re saying.
And it links to the other topic of reimbursement. We don’t want to get judgmental about lifestyle, but it is a bald fact that HIV drugs, which treat a disease that is often–not always–avoidable through prudent self-protective practices, are covered by insurance, but insulin for Type 1 diabetes–an unavoidable ailment–is not.
My guess at the likely diff? When HIV drugs were first funded, their audience was thought to be self-limiting: They wouldn’t be around long. Now, political correctness and some economic kickbacking keeps the flow going. The insulin crowd was known to be a lifetime economic opportunity–you-all have to keep forking over the dollars.
Think of it this way: You are a precious and highly-valued golden goose.
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RR
/ 2015/05/13Ha ha. True enough! My personal opinion on why they bleed us dry…well, Diabetes is hardly marketable.
Not like cancer. Where, mind you, apparently sex sells. Gotta save those tits! Cut the fucking things off, I say. Try not having a pnacreas. Because it isn’t marketable, it isn’t understood. No one wants to listen to differences between the same disease beyond location (ie. mouth cancer, stomach cancer – cancer of the mouth, cancer of the stomach, easy enough to differentiate between).
And then there is the GOLDEN GOOSE factor. As you so keenly pointed out. We diabetics must pay to stay alive. Insulin (in my case two different kinds), test strips, lancets, glucometers, syringes. The pharmaceutical industry will never let us go for fear they will crumble. If only they treated us as though we are highly-valued.
Also, there isn’t a hip-cool celebrity to attach the disease to. Or at least one who actually advocates with purpose and meaning. And, the celebrity-crazed state in which society seems to dwell, that is almost a necessity for progress.
Oh well. Looks like this goose will sit pretty until someone has the balls to plant some seeds. 😉
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Outlier Babe
/ 2015/05/13You-all should have had Mary Tyler Moore preserved in amber.
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