Friday, May 6, 2016

~ Learning Lupus

There's a line between TMI and keepin' it 100. 

As with many lines in life (having fun/getting arrested... boozin'/throwing up...  working hard/not playin' enough...  eating one cookie/eating.  All.  The.  Cookies.)  I, like everyone, sometimes struggle to find the balance.  While I'm pretty sure this may cross the line and violate HIPPA rules.  (Joke.  HIPPA only applies to others, not self disclosure.) I don't know another way, so here we are--

I told ya I'd share what I know about Lupus, and I don't like to be a liar.  Plus if it sheds a lil' light on what the fuck Lupus is for those fortunate enough to be ignorant of it, win/win.

Me:  One month hospital free.
February marked the first month since November (the month I was diagnosed with Lupus, aka: The Loop) that I hadn't been sent to the hospital.  I was stoked.  ...Look at meeeeee, bein' a healthy girl again...  #Hubris  Also, I was chuffed because I already knew I'd be hospitalized in March, so, yeah, a month in a row was in fact a big deal.  I had been scheduled for surgery on March 28.  The kind you can't walk up steps for 2-3 weeks, or pick something up when you inevitably drop it on the floor, or lift anything heavier than 10 lbs.  With that in mind I decided it was time for gettin' *surgery strong* (Yes.  I sloganed my own slicin' open.)  so I could recover and not be a pain in anyone else's ass be independent 'ol me as fast as humanly possible.   I started by upping my walking.  I was routinely hitting 2, 3, 4, (a few times) 5 thousand steps, heading towards the 10,000 steps per day ''they' recommend 'cause I'm a badass.  (I know 2 - 5k doesn't sound like a lot to some, but it wasn't that long ago that if I was walkin' 100 steps I was feeling like a marathon winner, so, suck it.)

It was awesome.  I felt like I was gettin' stronger and healthier and, well, normal-ier.  As in the BBG norm of, I do what I want, bitches.  (Instead of, I by a fib of omission, went to the grocery store but didn't mention it to anyone because it would have been considered too much and/or unreasonable.)  Physically, for the first time in months I felt like I could breathe deeper (not 'normal-normal' [aka: a full and/or pain free breath], but more so than I had been capable of) and without the amount and frequency of pain that had accompanied oxygenating since November.  It's hard to describe what it's like to have breathing be painful.  Even as someone who's had asthma since I was young, it's a sensation that is practically indefinable.  Imagine being given the rules of not hyperventilating while at the same time not being able to take any level of a deep breath for the next six months with the threat of bein' hit with a cattle prod if you do.  That's kinda what it's like.  They were heady and exhilarating days, my friend.

Until I started having chest pain.  I wouldn't have admitted it at the time, because I didn't, but it was pretty substantial-ish pain.  And that's said by a girl who once slid  --a term I may be using in it's loosest possible definition--  into second, collided with the second baseperson hurting my knee, back and wrist, decided the pain wasn't enough to not play the next two innings.  As catcher.  'Cause knees, backs and wrists are not integral to that position.  And then determined that driving a manual transmission'd car to the hospital to get looked at was a viable, nay, reasonable option.  (Result:  Broken wrist and one funny ass story.)  Naturally, I assumed I'd pulled a muscle.  (I assume everything that doesn't have a direct [A-to-B] cause 'n effect is probably just a pulled muscle.  Like.  Always.  It's my patented go-to move.  [...Now if you need medical advice?  I'm wickedly awesome at my layperson triaging and recommendation givin'.  Like so good I could provide references.])  The feeling between my heart and shoulder was very specific and pinpoint-y.  The feeling in my chest made me feel like I had to hold my breath to lie down or bend over as a coping mechanism.  Mom ordered me to cool my jets.  And while I don't generally respond well to bein' told what to do I recognized that this was sound and probably, even though I hated to admit it, reasonable orders from my RN (ICU experienced) mother.  Guess what?  After several days?  A week?  I'm bad with time.  The pain in my chest lessened, dramatically.  

By this time Mom had me reporting in my vital signs on the reg.  My heart rate was higher than my norm (in the 120's [at times in the 130's and 150's/beats per minute] when my usual is 70-80 bpm) while my blood pressure was lower than it historically runs (120 - 110's over 80 - 70's, my usual, became 89/52 type pressure) those clues concerned her.  Not me.  I was still convinced I was fine and the newly abnormally trending numbers were flukes and I'd be ready to climb Mt. Everest any old day now.   (The power of the mind to skew is undeniable.) 

I started to try to run a temperature.  In my mind, nothing of a big deal, 101.7, two afternoons in a row.  I took two Tylenol each day and my temp went away.  Problem solved.  ...Or so I thought.  (And then I learned something new about the Loop)  Apparently, being on 'roids (steroids to try to control the Loop) means your temperature is artificially kept low so running any degree of higher than 98.6 is a bad sign for Loop-ies.  Seven months ago a fever would have meant nothing to me, now a few tenths of one-hundreds is the sign that something may be trying to kill me.  A quick morning trip to my GP (general practitioner) and I was dispatched to the ER.

They found that I had a good amount of fluid around my heart and lungs (heart = pericardial effusion, lung = pleural effusion *).  For some reason I'd imagine lots of folks think, 'oh, fat girl, of course you have heart problems', but the truth is I've never had such issues (nor high cholesterol or blood pressure).  Aside from allergies, asthma, a congenital kidney defect and subsequent problems, and bein' generally klutzy, I've always been as healthy and as strong as an ox.  I started my campaign angling to go home from the moment I arrived, trying to finesse each doctor as they entered my room, assuring them that I was fine.  That the pain had been much greater before when I was increasing my activity (before being told to cool my jets) than it was currently.  And each time, as if they deduct points from physicians if patients die on their watch they all essentially laughed at me as they scribbled 'do not pass go, send to cardiac care unit'.   

( *  Funny.  I don't look any medical shit up.  But I do look it up so you can have the proper explanation and not my half assed BBG version.  [You're welcome]  There hasn't been one thing [condition, ailment or symptom I've experienced] included in this or my first post about the Loop life that the cause of the ta-doin's hasn't been attributed to
one thing;  lupus.  Lupus is evil, y'all.)

So.  There.  I.  Was.  Honestly?  Feeling like everyone was going overboard.  It seemed like a lot of fuss over something that didn't seem dire (less than 'ideal', yes, but 'oh, holy fuck?'  Nope.).  Looking back I suppose I should have been quicker on the uptake considering how many and how often baby Docs (interns, residents, fellows [and 'real' doctors]--  it's Big 10 teaching hospital) were brought 'round to see the sights learn from my weirdo complicated case.  But I didn't.  So I was surprised the first time one of 'em told me I was having a Lupus flare.  Mainly, because when I was diagnosed it was (aside from the splenic infarct and my blood tryin' to kill me) all about hot, swollen and difficult to use joints.  My reference point for what having a flare was that I would always be tipped off by my joints.  (When I was diagnosed I entered the ER having somewhere between 'trouble' and 'great difficulty' using my walkin' joints [knees, hips, ankles].  Within 3 hours of my arrival I could no longer walk unaided.)  That would be my hint.  Reality?  Wrong.   As I learn more about it, I can not count on joints for signaling things are goin' off the fuckin' rails, apparently my hint may also be hey, you're heart is tryin' to kill you.  ...So that's reassuring.

Oddly, I feel like I could do anything (another false lead by the 'roids).  But actually doing things ends up with increased chest pain.  (Fucked up fact:  Due to Lupus damaging my heart I can now hear my tricuspid valve.  It makes an audible [to me.  Me!  Which is, ya know, unsettling and super not fuckin' cool.]  'click' when I'm doin' less than stellar.)
Fact:  'Roid rage is real, yo.

After about a week I had been given a massive enough amount of 'roids to move enough fluid off my heart and lungs to reliably not die (and it not be some Docs direct fault  [Dear Doctors,  I love you.  But I am on to you.  ~ BBG]) and released from the CCU.  In the span of literally a couple of days the 'roids increased my weight by 16 lbs and turned my face from a place with cheekbones to a big, puffy, round, circle space.  (Yes.  'Round' aaaannnnnd 'circle' seem redundant in one sentence.  THAT's how 'roid-y routund my face is currently.  It requires multiple descriptors.)  I know it sounds vain to even mention such a side effect in the midst of tryin' to stay alive.  Noted.  But the speed of such noticeable and demonstrative changes has been (Sorry, Not Sorry Pun Alert:) in-yo-face disconcerting in a way that the secret shit happening inside isn't.  Perhaps, it's not vanity, but the fact that it's such an substantial (and honestly, jarring) sign that things aren't goin' great, which is generally in direct opposition to how I prefer to live, and be seen in life, that makes it even a blip on my radar, ya know? 

Yesterday I knew what to do with blush.  Today I can't even find my cheekbones.

It's becoming obvious that 'how I prefer to live and be seen in life' are whimsical luxuries of days past.  The priority now is morphing into simply staying alive.  Which sounds overly dramatic until your cardiologist tells ya the Lupus has permanently damaged the sack around your heart with scar tissue that doesn't pose a 'fill' problem, but does cause a 'pump' problem. ...Oh.  Ok.     

We have 22 internal organs keepin' us alive.  Lupus is already attempting to pick off 2 of 'em.  So the future looks bright.  One of which has happened whilst under pretty extreme medical oversight and treatment.  How extreme?  I've had more than 40 doctors (medical tests, lab work, et al) appointments in the 63 week (working) days since the beginning of the year, that means on average I haven't gone 2 (week) days in a row without a medical appointment in 2016 (and that doesn't even include hospitalizations factored in). 

Funnily enough with all of that I still have to actively remind myself that I'm not well.  Again, the power of the mind to shape one's reality...  I've been forced by circumstances to adapt to certain aspects of not being healthy.  No boo hoo-ing.  We're all forced to adapt to the sack of shit we each must carry in life. 

(Sack of Shit Definition:  Shittay stuff that befalls us that we have the choice to either let kill us/drag us down/fuck us up/steal your youness, or adapt to. 

What differentiates this shit that's happening from one's sack of shit is that usually shit that's happening allows for ya to change its course, reverse it, alter its outcome or mitigate its severity or life impact--  stuff that depending on things in our control might/likely provide you with an opportunity to sit that shit down, move on from, ignore, overcome, put behind ya, etc., whereas one's sack of shit is a permanent, unchangeable, and no matter what you do can never be put down or improved.  It's always with you, like an invisible weight.  Everyone carries a sack of shit.  You might not see it or know what it is, but it's there.)

I'm adapting to the fact that I have to change my, 'it's probably just a pulled muscle' inclinations, and that my SOP of walk it off/suck it up mindset is no longer pragmatic, or in my best interest.  I wish I could report that realizing that it's easily lethal makes it an easier change to make.  It does not.  But I'm tryin' to get right with making the mental switch that everything isn't an acquiescence towards hypochondria but a step towards stayin' alive in the new norm.  Having to acclimate to paying attention to what I'd normally consider non-acknowledgement worthy minute health changes, feelings or statistics is hard.  But when the prize is not losing an organ, or your life, it's a game who's rules I must learn to abide by in lieu of the standard BBG rules.  (Apologies.  That was probably more of a reminder for me than a learning about Lupus for you.)    

I'm discovering that the Loop requires a lot of adaptation, concessions and yielding.  Frankly, waaaaaay more than I'm comfortable with.  ...Not that what I'm comfortable with matters one flyin' fuck in this situation...  Acknowledged.  (Life never promised to be 'comfortable'.)  Like it has insidiously impacted my innards I notice it impacting almost every aspect of my life.  More on that on a different day.  (There's only so much Debbie Downer-ing I can involve myself in on one day.  Today I only have it in me to detail the physical impact.)

Before I conclude this episode of Shit You Probably Didn't Know About Lupus, I'll leave you with a couple of last who-knew's?...

Fun Facts:  Another tip off to a Lupus flare I can tell ya about is hair loss.  (Yeah, that happens too.  Not to a bald-y degree, but enough that I thought I'd noticed that there was an overabundance of hair in my brush each time I used it [like the pulled muscle thing?  I just continued on by workin' with the;  I'm sure I'm just bein' hyperaware of something therefore it seems like more is coming out than normal than when I'm 100% not paying any amount of attention to how much/little hair is in my brush, ya know?  [...Again, power of the mind to position things so that you don't have to go on a murder spree...] , and that my Mom unprompted asked if my hair was fallin' out.  So, noticeable enough.) 

You can kill me.  Because of the drugs used to try to fight the Lupus, which in my case means the attempt to keep the Loop from jackin' up the rest of my organs, ya know, the other 20 that have yet to stage a coup and try to kill me, I'm now immunocompromised.  The med is also given to organ transplant patients so that they won't reject their transplanted organ(s) and lowers one's immune system to the point that kinda everything*, including (yep) you poses a danger.   

* A few 'everything' examples;
  • Plants/flowers/mulch - they carry microorganisms that can cause infections 
  • Foods (a surprising number of foods)
  • H20 water (when unfiltered or unbottled) and ice.  As an added bonus swimming in standing water (lakes, ponds, hot tubs)
  • People who have had live vaccines (MMR, rotavirus, flu (nasal spray), chickenpox, shingles, smallpox, typhoid [oral only] and yellow fever) or are experiencing colds, infections (skin, respiratory, strep, etc.,) or are in any manner contagious
  • The actual fuckin' sun (As a extra special perk, also indoor lighting)
  • Crowds, buffets/salad bars, mani's/pedi's, public gyms
  • short if it poses a threat to someone being treated for cancer or someone undergoing a bone marrow or organ transplant, it's now something I must be cognizant to avoid for the rest of my life.
  • Johns Hopkins recommendations for the immunocompromised

Generally, I don't discuss the details of other people, but to underscore the importance of the danger I know someone with Lupus who got what at the time was thought to be a super minor infection.  Within a day or two was sent to the hospital, that day was operated on for necrotizing fasciitis (nec fasc) and spent weeks in the ICU trying to save their life.  More than a month was spent in the hospital once the flesh eating-ness had been stopped due to the havoc wreaked on their overall tenuous Loopie health.  It then took more than two years (yes, 2 YEARS) for the wound left from the margins needed to be cut (to stop the nec fasc from spreading) off to heal.  The person nearly died and the event stole more than two solid years from their life.  They still have complications due to that super minor infection after several years that have passed that dictate how time and energy life gets spent and still necessitates numerous doctors appointments and medical oversight to manage.   

If you're beginning to get the impression that Lupus isn't just a funny sounding disease, you're right. 


Thursday, March 17, 2016

~ It's A Great Day For The Irish

I. love. St. Patrick's Day.  It hands down is the highest of BBG holy days.  But truth be told?  While I've celebrated like a mother fuckin' boss, I've always felt the pang of bein' an Irish outsider.   

This is at least six-10 of my annual tipsy St. Patrick's Day conversations:

   Drunken stranger/new best friend: Are you Irish?  (generally followed by a laugh o' mockery)

   BBG:  No.  But I'm the most Irish non-Irish girl you've ever met*

This is usually followed by my laying out supporting assertion details.  Including, but not limited to the fact that my H.S. was the home of the Fightin' Irish.  I like to weave craic into conversations.  I love a man in a kilt.  My love of bagpipes.  My propensity for using póg mo thóin.  (kiss my ass in Gaelic)  And that it really pisses me off when people use St. Patty's as opposed to St. Paddy's.  (Although in fairness it does serve as a quick tip off to who is a poser and/or straight up dumbass. [Thank you for hints, world.])

Claddagh:  The hands signify friendship, the heart love and the crown loyalty

...But I've always felt like an Irish interloper.  Like, as much as I enjoyed the day, it wasn't rightfully mine to celebrate.

That was until shortly after last years St. Patrick's Day, when my Mom received the ethnic make up portion of the DNA test she had taken over the winter.  My love of St. Patrick's Day suddenly became Waterford crystal clear (and rightfully mine, bitches.  Sorry.  O'Bitches.) when it was determined she carries a 30% Irish genetic make up, by extension making this lil' BBG at least 15% a product of the Emerald Isle. 

My surprise, and glee at the news was immeasurable.  The idea that this St. Patrick's I would be able to fully, and without feelin' like an imposter, get my shenanigans on was an actual mind blower.  For eleven months I've been looking forward to St. Patrick's '16 with the anticipation and zeal of a virgin awaiting their first penetration.  In preparation I've started referring to Éire as 'the motherland'.  Quasi obnoxious and 100% true story.

Recent health issues will preclude me from celebrating in the style I desire and am accustomed to.  Which for clarification is perhaps best summed up by a comment a former co-worker once turned whilst recounting being at the same place I was St. Patrick's-ing one year a long ass time ago;  "...aaaaaaaannnnnd that's when I thought you were getting arrested."  (BigBoy shoutout)

The Paul Harvey-y rest of the story?  Unlike 99.44% of reasonable people one of my tipsy ideas of a good time has always been gabbin' with the po-po.  On this particular St. Patrick's Day there were a couple of off duty city officers who showed up at dusk to the outdoor tent shindig.  Naturally, at some point I found myself chatting with the boys in blue.  About what?  I can't accurately say.  But we'd shared some giggles, I may have told them how to do their job when I was the one who pointed out a car driving the wrong way up a one way street next to us.  Somethin' along the lines of '...well, ok, dumbass, but between the two of us I'm the only one who's noticed a car goin' the wrong damn way up a one way street.'  #AlwaysClassy  (He laughed and super sheepishly walked over the offendin' motorist to turn him around.)  Surprisingly, "......aaaaaaannnnnnnnd that's when I thought you were getting arrested" wasn't even about that.  Nope.  I remember the other officer, who I had not tipsily called a dumbass, and I shared a laugh about something I'm sure was quite inappropriate ridiculous.  Sometimes when I'm in the cups I have tendency to get a lil' handsy.  Not grope-y, but I'm probably gonna touch ya.  Especially if you're cute.  And sportin' a Glock and badge.  The laughter caused me to poke said officer in the chesty-belly area in jest.  Which because his hands were in his coat pockets this in turned made him lose his balance and he started to tip backwards.  By instinct, and with my cat-like reflexes I reached out grabbed him by his front (coat) zipper and pulled him back to true vertical, thusly saving his life, or at least so goes my version of the tale.   

It's true I probably won't be in danger of being at a level of revelry where anyone thinks I am this close to goin' to the hooskal like a hooligan.  I will be enjoying this St. Patrick's more than I ever have before.  (Hope you do too.)  Sláinte!

* Things I never have to say again.

Other St. Patrick's Posts:


Tuesday, February 23, 2016

~ My Life Advice

Don't compare yourself.  You can admire, even steal behaviors 'n attitudes you respect in others, but remember the only fair comparison you can ever accurately make is between Today You and Yesterday You.

Live 15% with an eye towards the future.
15% with an eye towards the past.
70% in the fuckin' moment.

When you have an opportunity to be kind, generous and magnanimous do so.  Always.  But when you have to be a bitch/bastard because you've been left no choice?  Do that too.  Don't be a punk, but don't let others make you theirs either.  (Pro-tip:  Know the difference.)

Once you do something, anything, you're responsible for having done it.  Period.  Once it's done know that you do not get to determine the reaction to it too.

Dust pans are for suckers.  If you're already cleaning flat floors that meet with a carpeted area sweep the crud near the joining point, get out the vacuum do the carpet and just suck that crud up.  Two tasks complete and you didn't have to fight that line of crud that is inevitable when attemptin' to sweep it into the dust pan. 

(Bonus vacuum-y advice:  If you have carpet on two levels of your abode have 2 vacuums.  Never have to lug your
suck machine to the other story again.  #GameChanger)

Assess 'yo self.  Daily look at yourself in the mirror and ask yourself if you're bein' the kind of human you want to be.  Be honest.  (Adjust as needed.)

Should you do it?  Is it illegal/immoral/unethical?  Is death, maiming or a trip to the ER (of yourself and/or others) a possibility (or probability)?  If you heard a story about someone else doin' it would you lose respect for them?   If the answer is no then give that shit a whirl. 

Remember you're never too old to blow bubbles, eat cotton candy or watch cartoons.  Be suspicious of anyone who says otherwise.

Never forget what life was like when you worked some of your first shit jobs.  Never treat anyone doing so now like jerks treated you then.

When the fancy strikes ya have dessert for breakfast.

Don't let anyone else define who you are.  When it comes to you, you are the author of that definition.  With that said, people are free to make judgements of you based on what you show them.  Ones perception is their reality.  (Pro-tip:  If one person asserts you're XYZ that you don't dig?  Write it off.  If scads of people, particularly those who you know have your best interests at heart make the same claim?  You owe it to yourself to take a honest second look.  It's the life-y equivalent of double checking the blind spot on your vehicle.)

Donate blood.  Register to be a bone marrow donor.  Check the box that says you're an organ donor.  Don't just be the kind of person who says they'd save someone's life if they had the chance, actually be that person.

Pay attention to sayin' vs. doin'.  In yourself, and in others. 

Know that the appropriate amount of time you should spend trying to change someone other than you is:  3 Minutes.  After that either you actually have a poor idea haven't sold it in a compelling way, or they're too proud, stupid or stubborn (they've told ya who they are;  listen) to even for a moment consider your way of thinkin'.  By minute four you are absofuckinglootly wasting your time.     

Learn that an apology doesn't contain an 'if'.  (...if I xyz'd ya I apologize...)  An apology is an acknowledgement that you did in fact commit a transgression.  If you don't mean an apology don't give it.  Yes, that might make ya a jerk, but at least it doesn't add liar on top of it.  (Also, please note that to actually fulfill an apology you can't continue to do that fuckin' same thing.  That makes ya a jerk, liar and asshole.)

When you see children wave at you always wave back. 

Remember that respect, character and integrity are more valuable commodities than swagger, cool and popularity.

Sleep nakid.  Those few hours are the only time you can be completely unencumbered (without being arrested), take advantage.

Say 'no' more often.  No isn't a dirty word, it's simply one we use to set the appropriate expectation.  And there's little worse than having to do something that you committed to that ya never wanted to do in the first damn place.  (Side benefit:  When you say 'yes' people will know you sincerely mean it.)

Remember you are going to die.  Weigh options of how you choose to spend your time and invest your energy in against that fact.  Choose wisely.  Nobody ever complained that they spent too little time doin' chores, or pining for someone who didn't pine for you back, et al, on their deathbed. 

Freely acknowledge that shitty situations are shit-tay.  Also, that they create an opportunity for you to prove your might.  The phoenix doesn't rise from fluffy marshmallows 'n rainbows.  It rises from the scorched ass ashes.  You can too. 

(Extra shitty situation fact:  If you find yourself repeatedly in similar shitty situations?  At some point you have to recognize the common denominator is [drumroll] you.  There's plenty of shit to deal with when adulting;  Don't invite additional shit.)

Laugh at yourself.  Often. 

Laugh at others.  Sometimes.  (Like, when it doesn't make ya a complete dick.)

Watch the news.  Yes, obviously it's important to be well-rounded and cognizant of daily and worldly ta-doin's, but it always gives you something to talk with people about.  When you're even minorly knowledgeable about an area someone else is interested in it breeds common ground, which is always an advantage when dealing with people.  Both in business and personally the ability to toss out a tid-bit important to them can not be over evaluated.

Cleaning.  Decide that for the next 15 minutes you're gonna clean.  Short and consistent bursts of cleaning means you never have a messy place and that you never have to do anything stupid like devoting a whole day to cleaning.

Practice left-right-left driving.  Just before the light changes and you start across an intersection look left (your drivers side), right (passenger side) and left again.  You look to your side twice for the same reason parents put their air mask on before they start putting it on kids on a plane-- you can't help anyone else if you're dead. 

Let people fuckin' be.  If how they choose to live their life has no demonstratively negative impact on your life, live and let live.

When new things present themselves try 'em.  Whether it be foods, experiences or people.

DWYSYWD.  Do what you say you will do.  If you can't, won't, don't wanna do it don't say you will.  This act alone will keep you from a million forms of drama trauma.

Put yourself figuratively in the shoes of others.  Explore how your feelings and viewpoints change when you see people and situations from vantage points other than your own. 

Recognize that that's 'how we've always done it', or 'that's how I was raised', or 'tradition' are often pretty fucked up reasons to continue doin' stuff.  Decide to do, or hold on to things, based on their merit, appropriateness, or validity under real-time conditions 'n circumstances.  Ask yourself if X was presented as a new concept today does it (without its history) seem reasonable and sound?

Don't speak of yourself in the third person unless you actually want people to think you're a douchebag.

Look for the silver lining.  If you can't see it, try to be it.

Don't conflate not staring at someone with not making eye contact with them.  There's a dignity exchange in eye contact.  It's a literal acknowledgement that you see them.  Which sounds stupid (of course you see them, otherwise ya'd be bumpin' into and trippin' over folks all the damn time) until you consider how many people, homeless folks, peeps with visible handicaps and/or deficiencies, etc., are made to feel invisible, like their humanity isn't even recognizable.  Even if you can't magically better their circumstances, don't worsen it by pretending they don't even exist.  Or as it was ingrained in us as Our Lady Of Badass Catholic Kidz;  You never know which one is Jesus.  Act accordingly.    

When another driver lets you in acknowledge that they didn't have to do that, and that it was kind of them to do so.  It's called a thank you wave.  Without it know that somewhere there is a story being told about you and you are aptly being described as an asshole. 

Be no harder on others than you are with yourself.  Conversely, be as kind to yourself as you would be to others.

Have a pet.

Have empathy.  Often the only thing that separates you from the them you're tempted to deride is that you weren't born into those exact circumstances.

Make it a practice to be grateful.  The more you practice it the more you notice how very, very much you have to be grateful for. 


Monday, February 15, 2016

~ Guess Who's Taking Their Country Back? (Hint: Me)

Fact:  I don't have a bucket list and I don't believe in goals.  I believe in wanting sumthin' and doin' what it takes (as long as it keeps within the bounds of being legal, ethical, moral and generally not bein' a dick to others) in order to get it, or conversely, relatively quickly giving up and moving the hell on.  Scads of factors go in to which route I ultimately choose.

For instance, on a company trip a million years ago we rented a SUV.  From the moment I sat up in that seat and mashed the go peddle I knew it was a must.  I saved my pennies and the following year I purchased one.  I've only owned SUVs since.  Sticktoit'dness.

On the other hand, I, for a brief moment assumed I'd be Mrs. Adam Ant.  By the time Billy Idol hit the scene I'd given that up.  Giveup'dness.

But one of my most steadfast desires is one I've held onto for more than a decade, which is, as someone so easily distracted by the shiny thing that just caught my eye, an actual eternity.  I want to gain admission into the Daughters of the American Revolution.  Of course I realize this sounds refuckingdiculous.  I mean, what are the odds that any American can legit trace their lineage to an ancestor active in the American Revolution*?  Let alone a brown one?  While I'm certain there are other brown girls in the DAR, my guess is there ain't many.  And.  I.  Want.  In. 

( * ...Yeah, I got curious too.  It's estimated the DAR has 180,000 members while the boy version, the Sons of the Revolution has 33,000 members.  Meanwhile there are 322 million Americans, you do the math.  Seriously.  I'm shit at math
[Obviously there are those who can trace their ties back to the literal birth of our nation who aren't aligned with any number trackin' organization, but listen,
I can't Google everything...)

I have pestered my genealogy doin' (and saintly) Mom for yeeeeeeears.  Now it's important to note the I have contributed zero in the quest to bring such a thing to fruition.  Other than pestering.  And that shit is time consuming and more complicated than one might imagine.  I'm not a great daughter.  But I am the only one she has sooooo... 

To be truthy, not only have I not helped, I have actively attempted to dissuade the efforts, mainly when several months ago Mom told me she was doing that genealogy DNA test and asked if I wanted to also?  Pragmatically Immediately I was all, "just because I haven't had to commit a crime and/or kill someone doesn't mean I won't have to in the future.  I don't know what tomorrow will bring." as naturally, one does.  Rightfully so she did not listen to me.  ...Or maybe at her age she feels confident that she probably won't have to do a murder...  I donno.  (shrug)  Regardless, and obviously to my chagrin, she spit on a q-tip and slapped a stamp on it.   (As if to double down on my terribleness I subsequently mocked her upon reading this)

As you may have come to realize by this point I really, reeeeeally want to be in the DAR.  A) (and I don't know this to be true, in fact, it's probably safe to say it's not) I just suspect there are crested blazers involved in the DAR.  I must have one of those blazers.  (I imagine they're blue.)  I want to wear it every day.  I want a t-shirt underneath that perhaps in sparkly letters says I Want My Country Back.  2) I want to laugh as peoples heads explode when they are forced to see a BBG (big brown girl) free ranging the world in that get up.  Is that wrong?   In the past several years I keep hearing over and over again about folks wantin' their country back.  And frankly, I feel left out and I want in on that too.

(Correction:  My t-shirt will actually read I want My Country
Back, Bitches'Cause I'm that girl.) 

Flash forward to two months ago.  I'm at her (Mom and her hubby's) abode (we call it Southfork), I don't know what we were discussing when out of the blue she says, "oh, there's something I've been meaning to show you" whilst whippin' out the iPad.  Before she can even get the sentence out I chime in with, "did you finally get me into the DAR?"  Super surprisingly Mom pulls up what, from a bit of a distance I recognize as the layout of a family tree.  She goes on to show me one the crazier turn of events I've had in my life.  Ya see, as sheer willpower fates would have it, and in an enormous shock to me, DNA links me up as being the descendant of an American patriot.  By the way, we're not talkin' the loose way 'patriot' gets tossed about these days.  Nope.  Not only are we talkin' a by-anyone's-measure, patriot, we're talkin' a drafter of the Declaration of Independence.  (suck it)  And a President of the United States of America.  (double suck it)   I am the 6x granddaughter of (drum roll) Thomas Jefferson.

As stoked as I am to discover this tie to the beginings of our nation I gotta admit it also fills me with, I guess for lack of a better word, sadness.  Sadness upon the recognition of how common place it is that I'm essentially 'other-ed' in my own land.

Fun fact, this happens all the time--

- What are you?
- But where are you from?
- No, seriously, what are you?

The subtext being very clearly, 'because you're not white, I assume you are not a real American'  ...Which is awesome to have pointed out to you.  Constantly.  By complete strangers in the grocery store.  Or while clothes shopping.  Or when queuing up for a movie. 

...How's that for a routine affirmation that entire chunks of society have trouble even conceiving that the vaguely brown chick in line with ya is, in fact, what America is too?  One must admit that it's a shitty reality when skin hue is the seemingly sole litmus for determining what an American looks like.

But congratulations that's our culture.  We're strengthening it every time we nod our collective heads along with the growingly popular takin' my country back mantra.   It's the contrarian in me that leads me to want to co-opt I-want-MY-country-backness to mean a country where we actually do that everyone's equal stuff we've been having well meaning 'conversations' about since good ol' Grandpa Tom was still alive.  My version of wanting my country back is progressing to the point where America isn't just equal in 'theory', but equal in actual fuckin' practice. 

That's of course, not its traditional meaning.  The mainstream meaning of I-want-my-country-backness is something I've found interesting since it became a thing.

On the surface it's usually explained as; 'I want ol' time-y economics.  Or morals.  Or standards.  Or educational systems.  Or workplace settings.  Or.  Or.  Or...'  None of which off the cuff sound like nefarious notions.  (Completely unattainable and unreasonable?  Yes.  [Fact:  Progress, nay, evolution, has been stifled, held at bay and obstructed, but never has it been kept from actually proceeding.])  Easily palatable to large and nostalgic segments of the country.  Except to those who notice that the underbelly, and in-practice version of yearning for the good ol' days is that those were days that economics were often predicated on harsh conditions for the labor of the day.  Harsher still if you were a POC, whether it be the goin' backness of the 1950's or the 1850's.  Going back to the morals of the day logistically entails a longing for an era that it was either moral to own other (browner) people, or that it was morally acceptable to simply not hire, or serve, or worship with, or provide equal educational opportunities to, or live in close proximity to Americans who were non-caucasian, because, black.  ...Not to sound all, everything is black or white, but if history has taught us anything about how skin color impacts POC it's that with exception of the premise that white men can't jump and that black guys have monster cocks, being black in America has never, like ever, been anything other than a disadvantage.  Yes.  Oprah and President Obama exists.  But there are always outliers.  There are always exceptions to rules-- that's why we have that fuckin' cliché in the first place.  The fact that exceptions exists doesn't negate the fact that the rule is the actual norm most will experience.  And the norm for POC historically, and currently, is a state of disadvantage.  Not because it's my opinion.  Because of the actual evidence of disadvantages experienced by Americans based on the color of their skin, in um, everyfuckingthing*.

(Please Note:  *Not e-v-e-r-y-t-h-i-n-g.  Just employment opportunities, the ability to get a fair mortgage rate or car loans.  And;  the level of health care received from doctors, dining outemployment opportunities, housing options, treatment in the judicial system, employment opportunities, votingin education and appendicitis pain management.  Also;  if you may be in need of an ambulance, and whilst touring a college campus, and riding on a fraternity bus, and h.s. class photo days and when determining if a child is a child or an adult.  Or any of the literally hundreds of racial bias cases listed here that have taken place since 2003.)   

So, if you're keepin' track that's-- 
For contrast, I'll allow Tim Wise to detail some of the advantages of whiteness in America--  

So, no.  I'm not particularly interested in going back to any past era, no thank you.  Also the same reason I avoid plantations, and places with plantation in its name.  Just.  No.  Historically, folks who look like me haven't had a good time there and I'm not taking my chances.  My only interest is in moving forward and helping to create a country where melanin doesn't determine whether a person is randomly quizzed on their authenticity as an American, or used as a mechanism to put people at a disadvantage by the sheer fuckin' happenstance of being born with more of it than less. This?  This I want more than a blue crested blazer, ya hear me?  I.  Want.  MY.  Country.  Back.

* Even if they don't call 'em 'goals'.  (ahem)  True story.


Things you can do right now to help create such a place:
     - Inform 'yo self.  (Here [source: The Ohio State University])
     - Watch this YouTube of White Like Me
     - Stop waiting for the change and start bein' the damn change
     - Take the Harvard University Implicit Bias Test


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.  


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