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Monday, December 21, 2015

~ I Didn't Shit The Table & Other Real Tales Of Lupus

There are few things I loathe more than whining.  Other than weakness.  Correction:  Self weakness.  I blame it partially on my Dad who weaned me on The Guns of Navarone, The Big Red One, and Dirty Harry movies.  Between that and bein' raised by a couple of the strongest chicks I've ever met in my life (my Mom and Nana [the first female police officer in our city and the first woman and person o' color Asst. Finance Director of my hometown, respectively, in an era when either reality would squarely situate that happening between improbable and impossible.  #Word])  wasting time whining wasn't exactly a part of the daily protocol of my formative years.

Some folks pride themselves on the material things they possess or public achievements they can cite.  I pride that I know how to nut the fuck up.  I'm not makin' a moral judgment, just explaining what I value.  In my mind I believe I can outlast, out smart, out crafty, out tenacious, outfox or out ass kick most situations in life.   BBGConfession:  More frequently than I enjoy I am, in fact, proved wrong.  Fuck you fractions and baking.  But it's my natural approach to most shit in life.  (Here's a table I outfoxed decided I could make, based on my experience of having never built anything ever in my life.)   

For better, or worse, it is how I'm wired. 

On one hand, the following is something I'd almost never make a public peep about.  Under any circumstances.  (You'll know that because until now you've never heard a peep about this and this disclosure comes as a complete 'n utter surprise.)  On the other hand, I value keepin' it real, enough so that I feel like to continue to not mention it starts shifting into fib-dom.  Plus, keeping it as close to 100% as I can manage is not only beneficial to me, but also to those around me, albeit in ways I could never accurately predict. 

I remember a friend who had (at the time) recently had her first child.  She told me
this awful story about pooping on the delivery table.  In front of her hubby.  I had never heard any delivery tale as real as what she provided.  Being unfamiliar with the process in anything other than an awkward overview by the gym/health teacher kinda way, I found myself impressed by her honesty.  And that when she had to chance to avoid personal embarrassment at the cost of letting a friend stay ignorant of the realities of a situation she didn't.  I always admired her for that.  Lesson?  Only a true friend shares the real less than ideal details of life.  

...I also value bein' a true friend.   So here are the real details as I know 'em about things I'm finding out about: 

One day Mom mentions that it looks like I've lost weight.  This comes as a surprise to me, I hop on the measuring device (or, scale as I believe it's commonly called) and sure enough I'm down 40 or so.  Again, a complete surprise to me as I was vacillating between summer dresses and fall/winter leggings and yoga pants.  (aka:  The Official 3 items you can never gauge your weigh by.  Evidently.)  A couple of years ago when my Mom was pretty sick one of her doctors said he was giving me credit for two years of medical school based on my involvement in her care.  Naturally, I used my fake medical degree to self diagnose.  Initially I self diagnosed as kidney stones.  I was right.  That I'd regrown a benign tumor they'd sliced outta me a few years back.  I was right.  And that I had Lupus.  Guess who won one of the most shittastic trifectas you've heard about in a while? 

Arms: Bruises in the
front, bruises in the back.
Lupus.  Or, the Loop as I have christened it, is the most ridiculous sounding of the things going on, but as it has back burnered every other health condition poppin' off is the most serious.  And the least well known of 'em.  Well, for most folks, my friends included.  I've kinda always known about Lupus.  My Mom's only sister died from Lupus as a 13 year old just before I was born.  My Mom was diagnosed with Lupus several years ago.  (Actually, I diagnosed her before her doc at the time did.  ...My history of bein' right is strong, yo.)  Occasionally folks are aware that the Loop is an autoimmune disease, which to the best of my knowledge is Latin for--  your body is tryin' to kill ya.  That of course, is the H.S. health class overview of the situation.  The keepin' it real version?  The real friend version?  My experience, at least?

Yesterday I sat in the recliner chair for the first time in 6-8 weeks.  Until then the pain in my knees 'n hips was too great and my actual ability to get up from such a low starting point was too small.  Thanks, Loop.

To a couple of people I've referred to myself as 'Bruise-y McGee'. 

The other day I recognized I was 'doin' better' by the fact that I hadn't had to worry about whether my glass of water was too big/heavy to reasonably manage in the past several hours.  Fact:  When a beverages weight is a valid concern?  Things aren't goin' great.

I've become overly very concerned that if I pass out whilst gettin' my mail or sumthin' equally as random and the squad gets called they'll roll up my sleeves and give me Narcan as they will 100% for fuckin' sure assume I'm a heroin addict.  Frequent lab work is giving me tracks... 

Currently I'm apt to let out a somewhat startling 'hoooooo' from time to time like I'm some sorta mother fuckin' owl.  ....Oh, that?  That's just me tryin' not to let my legs buckle from the breath I'm in the midst of taking.  Or what is also funnily called, pleurisy.  My last full, deep and pain free breathe was around Halloween.  I've notice it has changed my laugh to a shallow ha-ha.  So, at least Lupus has made me seem more ladylike from my usual full on guffaw and/or straight up cackle'n ass.  ...So, I guess there's that.  (eye roll) 

Actual Lupus Facts:
  • At least 15M Americans have Lupus.  (Q:  Why 'At Least'?  Often Lupus is misdiagnosed as other issues.)  16K new cases are diagnosed annually.
  • Lupus generally appears between 15-44, mostly in women and particularly in chicks o' color (who are 3x more likely to pop Lupus positive than caucasians)
(Source:  Lupus Foundation of America)

Lupus is actively tryin' to murder my spleen.  (BBGConfession:  I feel like between my tonsils and appendix I've given up as many organs as I'm comfortable with.  ...Seriously?  On who's scale is that not enough??   Apologies.  That almost sounded like whining.)  Apparently it's a medical rarity, as I picked up each time my Hematology Dr. turned the phrase 'unusual and rare' (which somehow each time in my mind was translated into [in Oprah's voice]...and you get a crown and shash!  FYI, my raging case of self amusement-itus pre-dates the Loop diagnosis.) when she mentioned my Splenic Infarction, which is like a MI (heart attack) for your spleen that in my instance has caused a good chunk of the spleen to die off.     

Excess fluid 'round the heart?  Check.  Again, merci, Loop.

Kidneys?  What about the kidneys?  Oh, don't worry, they've been invited to the Lupus luau too.

I am off the cane, but there was a period of time that I was incapable of walking any distance without it, both from a stability and sheer pain standpoint.  While it's embarrassingly ridiculous true that just the other day I tumbled head, clavicle and arm first into the corner of a wall, I'm blaming that on sticky footwear rather than the Loop.  (I try to be fair with it's on/off hookiness.)  ...In that vein I suppose I'm obliged to give Loop it's due as an effective diet aid.  As it keeps me queasy both before and after I eat, unless I pop eight pills of anti-hurl meds per day.  ...Which is exxxxxactly as much fun as it sounds.  Also, not very helpful on that front is that my jaw joints reacted by not opening very much. 

...Speaking of pills.  Two months ago my daily pill intake was zero.  Today it's 23.  My cell chimes 8 times each day to remind my ass to take sumthin' to prevent any Lupus-y aspect from worsening.  (Not a complaint.  A month ago I was in the hospital with people pokin' and a prodding me 67 times a day between being visited by teams of specialists as if I were an exhibit at ye' ol' medical zoo.  Again, just a keepin' it real...

Lupus by sight:
Top = not great, but not as
awful as the bottom pic.
Joints swell and get hot.
My joints are overall gettin' better.  I know because I can now turn my faucet on (of the pull up-y variety) using just one hand again.   My jaw joints are starting to loosen up so other than flat-ish foods and beverages are becoming options again.  Because my elbows are able to straighten yes, a few weeks ago I looked like a chicken with it's wings stuck out and bear any sorta weight I can pick up a glass using the one arm'd approach, as opposed to the two armed toddler method I had been relegated to employing.  Hell, I'm driving small distances, like a badass grownup. 

As mysteriously as Lupus flares come on  (mine was probably no Scooby-Doo worthy mystery, all seem pretty confident mine was spurred on from a kidney infection I brewed in October setting my body on a jihad against my own joints and organs)  they subside (to some greater or lesser degree, the bounds of which I really can't say as this is all new to me and I just don't have the cumulative experience with).  I can see it happening when I notice things once nearly imfuckingpossible excruciating--  I was forced to watch some bullshit one day because pushing the buttons on the TV remote was too painful vs. the pain of not bein' able to watch whatever the hell ya wanna, in 2015--  are now more easily do-able.  I can hear it happening when I realize I've just completed an action (sitting... standing...  doing anyfuckin'thing....) silently rather than realizing that seemingly no movement can happen without a guttural corresponding, and uncontrollable grunt like I'm a power lifter hoisting 1,200lbs, yeah pounds.  Not metrics.  ...USA!  USA!  USA!

So, there.  You know a bit about the real deal of Lupus.  My flavor, at least;  In addition to the Lupus in my family (which is disingenuous to say, Drs. tell us that Lupus is not hereditary.  Two sisters and a daughter is a fluke.  Uh-huh) there are three others in my circle of friends who have the Loop.  Every one of 'em is troubled in a different way and to various degrees of severity with vastly different cycles of ebbing and flowing (length of flares/time distances between them).  Sure there are some overlapping commonalities, but my Mom has aptly deemed it the Whack-A-Mole of Diseases (TM and Copyright pending).  One system goes crazy and when/if ya get it medically managed another organ pops up as a problem.  Whack it back down only to have the next Lupus driven issue to arise. 

Now.  Kindly indulge me a couple of well, shit, I can hardly say no now favors...

As a chick with the Loop, and this is just me, I'd ask ya not to get all, I'm sooo sorry.  I now realize that that sounds like a bitchy thing to say, but listen, I just read some story about a child with half a head, and I can name ya entirely too fuckin' many friends who are battling cancer for their actual lives-- to be alive next week, or next year.  This, while seriously shittastic isn't that.   I mean, don't be sorry 'cause life is happening, ya know?  The alternative sucks and is 6 feet sub terra firma.  Few, and extremely lucky are the peeps who get out of here without having to adjust to some health malady.  This is, afuckingparently, mine.  As I mentioned the other day to a friend, suckin' it up and dealing with it is the option.  There is no alternative magic Option B that is somehow better.  

If we all threw our problems in a pile
and saw everyone else's,
we'd grab ours back. 

And lastly, part of the truth and reality about #LupusLife that I've learned, that I want you to know is that a Looper knows how they feel right now.  Tomorrow could be 180 degrees different.  If one can't accurately anticipate how they'll be doing 24 hours from now it's impossible to say with any degree of certainty 'yes' to a commitment next month.  It's why I'm now qualifying that my making a plan with ya is predicated on if on that day I'm able.  Before I wrote that I knew it was shitty...  But it is the reality.  The irritating to you and me reality.  I'm not tryin' to be cagy or dodgy it's simply that I want to set the proper and realistic expectation, for both of our sakes.   

I'll keep you up on the new things I discover as I experience them from time to time.  Not for whining purposes, but because all it takes to prompt others into getting alright with their bag of crap is for one friend to be ok with theirs, and speak up about it instead of worrying about what someone else will think of 'em. 

Until next time, keep it real, my friend.  

~ BBG


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6 comments:

Anonymous said...

I had no idea. Your authenticity is inspiring. Sending you my best wishes.
-TG

Anonymous said...

Per your request, I won't say "I'm so sorry!". I'll just say - well, that sucks! :( If you ever need anything and don't feel able to go get it, please let me know and I'll come and help. I didn't think I had your number, but I just looked on my phone and realized I do! (BAD FRIEND = ME! :( ) So - while distance-wise, I might be an hour away, in reality, I'm just a call away and always willing to do whatever I can for my friends. I'm sure it will come as no surprise to learn that I'll be adding this to my prayers. <3 BIG hugs!!!!!

~ Peaches

BigBrownGirl said...

Thanks, TG, I appreciate that. ALL of that.
~ BBG

Anonymous said...

WOW . . you continue to amaze me in many ways . . . from making grilled cheese sandwiches in a sauce pan to battling The Loop . . the best, always!

Anonymous said...

On a seperate and completely off topic note. I just read about Mike the headless chicken and for some reason thought of you. Or at least realized you might me one of the few to apprciate the story. https://en.m.wikipedia.org/wiki/Mike_the_Headless_Chicken.
Evil E

BigBrownGirl said...

- Peaches, thank you, you are too kind. ...And between you and me, I think *THAT SUCKS* is a perfectly appropriate response to the ta-doin's! (I probably would have gone curse-ier, but who's to quibble over semantics?? :P )

- HA! Thank you, (you didn't sign but I know EXACTLY who this is) ;)

- Evil E, Wait. Are you suggesting that at some point they should consider lopping off my head?? #MonikerEarned :P

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