Showing posts with label #LupusLife. Show all posts
Showing posts with label #LupusLife. Show all posts

Wednesday, May 31, 2017

~ Living The Lupus Life

It's Lupus Awareness Month.  For approximately four more hours.

(aka: ...So now I'm super fucking aware of how many
months I've been awful at increasing the awareness of Lupus. 
Fact: Eleven and 44/100ths months.) 

The other week I had an appointment with my Rheumatologist.  Whilst sittin' there flipping through some medical-ish magazine they leave in waiting rooms specific to, in my case, joint/autoimmune type patients, generally featuring some celebrity warrior* showing how great they're living with their affliction.  Lupus?  Oh, Lupus isn't holding them back from a 32 city tour, or hosting 17 TV shows, as they acquaint us with their 5 favorite tips for keepin' those washboard abs.  Lupus-schmoopus...   

* Once I heard local newscasters call area snowplow drivers, 'snow warriors' I could, obviously, no longer condone the footloose and fancy freeing of something that we all know belongs to those who've raised a hand and oath'd up to one of our military branches, not someone who overcame the battlefield-like conditions of Trader Joe's on the fucking weekend.  No offense, people who like to fancy yourselves warriors of some fucking variety or the other.     

...And look.  I don't want to sound like I begrudge them.  I sincerely do not.  (100:  Live long and prosper.)  I'm as thrilled for the people who are experiencing Lupus Lite™ as I am sad for the folks who are experiencing Lupus Worse, ya know?  The bottom line is someone else's state of Lupus ( --or, in general, their life) is of no consequence to me because it changes my circumstance zero.  I'm not as sick as I am because some other Loop-er is doing better/worse and vice versa. So, genuinely, I give them their full and due props.  They are, I'm sure, an inspiration to people and are successful brand ambassadors who help increase awareness of Lupus.

...But.  If we're gonna keep it real, (and let's) shouldn't the awareness be on what Lupus looks like for people who don't have assistants who can pick up the slack when you're having a flare and you literally can't pick anything up?  (Which I admit, sounds insane unless you are familiar with the Joy Of Loop [my newly commandeered forthcoming book title]. or right up until the moment you're standing in your bathroom in the morning wanting to brush your teeth, but even using two hands, your finger/wrist/elbow and shoulder joints band together in an coup to try to keep Get Shit Done You from generating the force needed to turn the faucet on.)  Frankly, that's the kind of awareness I need people in charge of funding disease fixes to have. 

I need the awareness to look less like Celeb-Lupus, and more like a person who at every turn is met by another shoe dropping.  But ya see, and as magazine cover create-ers already know, it's hard to depict that experience told without sounding like Debbie Fucking Downer.  

Annnnnnnnd now you know why I haven't 
mentioned it (Lupus) more frequently.  

The cold hard truth about Lupus is that for as many spokescelebs who appear (on the glossy mag covers, with the public relations manager approved interviews) to be relatively unaffected in their lifestyle there are an untold number who's lives more closely resemble mine--

I push each (day) month because I am a badass,
but also because it would kill me if someone
thought I was lazy or unwilling to push through.
Until today my last mention of the Loop was after I'd spent a week on the cardiac unit.  (Thanks, Lupus)  Post hospital-ing I tried not to go overboard in increasing my activity, I try not to do things that are likely to worsen things, I tried applying what people call, 'being reasonable' and gradually boosted my walking/doing general shit.  At the same time Cardiology put me on some heart feel good pill.  I remember there were six or so weeks in the early summer where I wasn't noticeably aware of my heart.  I suppose I don't have a better way of explaining it.  To say 'heart pain' would not be accurate, but when you have a physical change to your internal combustion engine that generates a new feeling inside of your body that you can notice?  That's not exactly a settling feeling.  It's not like the Tale Tail Heart or anything, but honestly, it's not that far off.  That month and a half or so was kind of like a wee vacation.  Not having to every fucking second assess if what your doing is going to cause enough pain that will result in some non-invasive-at-all procedure like, open heart surgery is, as it turns out, (...also, plus, and this;   being, non-medically trained and tasked with deciding where the line is between, probably not lethal, and this is probably how people die) Spoiler: exhausting.

Summer happened.  I did all the things a good Loop-er does, stayed the hell out of the sun.  Fun Fucking Fact:  Sun exposure frequently causes badness for Loop-ers ranging from rashes to generating a debilitating Lupus flare.  

I hung out twice like a grown up (read: non-Loop'd up) human being.  Once I was practically bubble wrapped (a la; dropped off at the door, picked up at the door) to achieve, and the second was my high school reunion.  

In the name of full Lupus awareness, ugh, the high school reunion I went to because I make it a habit to attend, but with that said, I pushed my self [physically] to go because I didn't feel 99.44% sure that I'd be here for the next one.  (FYI, I feel like if I'm lucky I will be.  I also feel that n-o-t-h-i-n-g  that has turned out to be my path of Lupus leads me to believe that I'm endowed with above average fortune when it comes to how things are going.  So, yeah, I thought I'd better carpe diem it.)  I had 2 1/2 beers that night.  Which as a girl who was raised and matriculated Catholic, and now that I'm aware of my Irish roots, I found downright depressing.  Lupus is a shenanigan stealin' bastard

During the course of the reunion one of my knee joints swelled to a point that I couldn't bend it to walk normally.  A classmate, friend since middle school and chauffer for the evening ('cause who knows what happens when you mix 666 pills per day with a bit of booze?), LEM touched my knee and was shocked by the tactile heat it produced.  (Have party tricks will travel.) 

In September Cardiology maxed me out on the heart meds, letting me know that if the additional meds didn't TCB, I'd be looking at pericardial stripping

Also, September...
That one time ya have surgery
 & before you're properly
awake people let you look
like you have a big blue penis...
I've had 5 open surgeries (not including some small, surgeries that I almost feel bad about calling surgeries, but were preformed in an operating room and involved going under anesthesia, which I'd place at? 15?). 

I'm not one predisposed to being particularly concerned about going under the knife [my 1st was when I was 10 so I hardly remember a life where surgery wasn't kinda routine]...  But two things make me feel uneasy about the concept of this one looming over my head.  A) Fact:  The Cleveland Clinic does about 40 of these per year.  Now, if the mother fuckin' Cleveland Clinic is only doing 40/yr?  You know you're not supposed to be doin' that.  You do things where the smallest poedunk urgent care is doing hundreds of 'em.  You stay as far away from the operation that one of the most prestigious hospitals in the nation only does slightly more than a few handfuls of, ya dig?  And II) You know when old folks break a hip and it's all downhill from there until they're swirling the drain?  That's what I feel like this procedure would bring about for me.  Last year it was impressed upon me that due to everything Lupus related I'm a poor surgical risk, and a bad horse to bet on to recovery well (read: without contracting an infection that I wouldn't be able to fight off [anti-rejection meds eliminate your immune system so infections, viruses, bacteria, measles, MRSA, etc., are all super easy to kill you), my increased propensity for blood clots [hence, my super cool splenic infarct, which Fun Fact: When you Google most frequently uses the term, 'rare" to describe, jealous?], risk of pneumonia that would increase lethality, etc.), and when that conversation was had it didn't involve a proceedure (or recovery) as involved/invasive as the splitting of one's sternum.  When I say my goal is to not be any part of this surgery, I'm tellin' ya, I'm doing everyfuckingthing possible to avoid being a part of it.

Early October brought me the opportunity to get to hang with one of my BFF's in from California with a few other local friends one night downtown.  (When you can count your outside fun and frivolity on less than one hand for the full year, that's not, ya know, ideal.)

The end of October brought the joy (and work, and training, and patience, and stamina needed, et al) of an 8 week old puppy.  Naturally, his wee ass arrival was adorable.  But it also necessitated family asking if the cute AF pup was killing me with the added activity (in/out, upstairs/downstairs, the this, that, and othering that I'm totally not complaining about puppyhood) accompanying a nearly new dog. 
Understatement: Puppies are a LOT of work.
Also, they are afuckingdorable and possibly
a key component to human-ing.

Honestly?  I never would have admitted it at the time, but those early weeks and months confirmed that @SalvadorDoggi will be my last canine friend.  I can't forsee any way where future me would be able to do all it takes to raise a dog to be a gentleman.  (Gentledog?) 

A perfect storm of events collided at the end of '16 - beginning of '17. 

Because 'roids are physically bad for you long term, Rheumatology laid out a plan to shrinky-dink my 'roids on a weekly basis.  As I like to say, I'm not a doctor so I followed the word of the learned professional.  And within a scant few weeks the whole BBG operation was off the rails.  Increased joint swelling/pain to the point that my knees won't really bend their full range so I'm once again waddling more than walking.  Also, I started noticing that I was more and more aware of my heart business.  

Did I (these famous and arbitrarily vague to the point of being meaningless and un-useful words), 'do too much' and bring on a Lupus flare?  Or did the reduction of 'roids allow the Loop to get more unstable and become out of control?  ...Valid chicken/egg questions.  Questions that I have no answer for.  Lupus:  Your Very Own Medical Mystery Party.

Pretty quickly I was returned to my original load of daily 'roids due to the ramifications of dose changes.  Very slowly I have felt incrementally less wonky. 

The celeb spokes-folks present 'good days' as these days where they hardly even remember they have Lupus.  A good BBG day?  At no point did I wince when taking the two steps to escort my puppy outside (I'll let you know when this happens.)  For contrast, my old/bein' healthy norm was 11-12 flights of steps per day, now?  If I rack up 4-5 climbs I check behind my back to check to see if I need to adjust my invisible superhero cape that must have sprung from my shoulders.  Planning floor to floor is key.  I used to enforce a strict 'dumbass tax' on myself when I got to a floor and forgot something I meant to bring that entailed turning right the fuck around to trek immediately back to get whatever.  That's my SOP level of hardass'dness when no one is watching.   (So, if ever you've found yourself thinkin', man, she's kinda hard on people.  Yeah, that's what cuttin' slack looks like.  You're welcome.)

Annnnnnnd now you know why I've been on
social interwebs less than usual. 

I, BBG, do hereby, fully offer up this acknowledgement of my inner old men in the Muppet's Show balcony as I admit, I like to use a keyboard.  A real, honest to god, fucking keyboard.  I don't want to have to iPad-squish-my-fingers-together-throw-off-my-typing-gate keypad it.  So you know I'm not unnecessarily messin' with the keyboard of the phone.  Nope.  Uh-huh.  Some regular Lupus days the coming to the computer, and the sitting up long enough to do whatever, and adding an extra flight of stairs is more than is without some ramification do-able.  (Again, could the computer be moved to a different floor at BBG HQ?  Yes?  It'd, like a pizza, take one phone call and thirty minutes.  Could I use any of the two other devices at my disposal at BBG HQ to socialize in the modern day way?  Again, yes.  I don't want to, and am only willing to let Loop change my lifestyle so much, as long as I have any power to exercise over it.  Self established internal fortitude-y line in the fucking sand
Clearly, this non-famous/ordinary Lupus life overview is not going to sell any magazines, although technically that kind of doctor office condition specific content is free, soooooo, it's not a feel-good, or an inspiring account.  Take it from me, absolutely nobody wants to have to think about establishing a hair washing protocol, FFS.  Again, I know that it sounds crazy, but days I'm going to wash my hair require deciding how to design my day so that whatever else needs to be accomplished (medical appts., errand running, puppy-ing, meal making, blah, blah, you know what daily things are, blah) can happen.  What type of rearranging 'n rejiggering, or the resisting of doing other things must take place to include that as part of the program.  Today, actually, I realized that the last time I washed my hair, the concept of holding my arms above my shoulders long enough to wash, rinse, repeat (possible mortification alert: maaaaybe condition), toweling, combing, morocco oil-ing, double fisting to hairdryer and brush simultaneously, and completing with a flatiron, for the first time in a long while hadn't seemed daunting.  [Lupus non-unicorn/spokeslebrities peeps can't have anything they don't have a plan to for how it's going to go, or an have an idea of all that it entails, or every foreseeable permutation.  Not exercising such prudence is an invitation to negative health consequences that can hose your next week or six, or six months. 

"...The only thing worse than having trouble doing something once is having trouble doing it fucking twice."     
                                                                 - Moi

The other day, (an ordinary human Lupus day) I started a new dose of anti-rejection med.  It's, apparently the highest dose that can be taken.  (Which is just the kinda thing you hope to hear at a doctors appointment.)

I tend to feel less super as the day wears on.  (Which seems to be opposite than a lot of Loop-ers.) 

I also tend to get a lot of lectures about taking pain meds, because apparently, fucked up personal fact; I feel like Lupus is making me say Uncle if I take one.  (Lupus is [already] going to win with it's home field advantage and all, why should I have to be a good loser too?) So it wasn't a great sign that day when my first thought as I took my first morning steps out of bed were, should I take a pain med?  A pain med is like a moral acquiescence to me.  Like, it's my absolute last go-to move.  Unfamiliar readers will take that to mean, 'ok, she's not big on poppin' pills.'  Friends 'n family are like, 'oh, my god, call 911, she's so bad off she's taken a single pain pill!'  (audible fucking gasp

Soon I started to feel like I was on the verge of vomiting.  The unyeilding Lupus questions to be considered is, in fact, unfuckingending...  Verge of vomit, pain pill prompted?  Or new higher anti-rejection med based?  And how can I do what Cher hasn't mastered and turn back time to do anything about it?
A festive li'l side effect of taking
the anti-emetic is that it gives me
the looooong QT's, fun, right?

Queasiness is nothing out of the ordinary.  (Kidney stones, the volume of meds I'm on, and a common symptom of Lupus itself are all queasy culprits, so your guess is as good as mine.)  But the heart biz means that I can only take my anti-hurling meds a set number of times per week, lest it fuck my heart up some more. 

Plus, fighting to stay awake from the pain medication is another of the big reasons I'm not big on taking it, choosing to instead wander around painful because, to paraphrase Garth Brooks, I don't wanna miss the dance, ya know? 

But I know adding no puke-y - puke-y to the mix will ensure a whole day surrendered to the Sandman.  There is no fighting the sleepy time agents involved in both pills.  This is when the game of Decisions-Decisions© starts to get interesting.  Be less miserable/more Rip Van Winkle, or be lucid and pre chunk blowin' mouth water-y because? Colum A) maxing out on anti-rejections makes nauseates ya, or colum B) your 'normal' queasiness is all of the sudden taken a turn for the worse?  See how Tim McCarver hard it is to make the right call?

This, is what the best part of my day looked like. 

And now you know why I try to float 'fine' as an answer for
how I'm doing when asked. 

The behind the curtain version, of what non-famous (without assistants, without above average resources, etc.) Lupus looks like when you're not on the we're doing' great end of the bell curve ain't rainbows and unicorns.  Noted.  But, again, isn't that all the more reason to be aware of what Lupus also is the next time you hear someone using it as an example for a wink-wink ailment that isn't very ail-y wink-wink?  Or the next time your local Walk To End Lupus happens.  I'm just sayin', nothing that isn't on someone's radar gets addressed.  Knowing more than the celeb spokes-folks experience of Lupus is already an increase of awareness so really my job here is done. [mic drop]  You've already helped with that (you just good-person'd by wasting time on the interwebs.  ...The times we live in, huh?).  

To augment my Debbie Downer-ing, Fact: Before you feel too good about yourselves; you've been out good-person' d, as, for the record, have I, by my bestie, AnonD who (as you can probably surmise by her code name is someone who would not like identified by name, or likeness) took Lupus awareness to heart with purple (the Official Lupus Color) to her head.  If you're curious how I haven't gone on some sort of spree?  A: I have these stellar people in my world: 
Lupus Awareness Hair!!
AnonD: Are you doing anything special for Lupus Month?
Me: Well, honestly I feel like by having it I've really done my part...
(belly laughs ensue)

I'm currently, again, trying to shrinky dink my 'roids.  Earlier today I walked Salvador out to the circle of grass possibly 15' [a more out of one's ass guesstiment has never been made] from the BBG HQ driveway.  It's maaaaaybe the second time this year I've felt like that probably wouldn't kill me.  So, I also want you to be aware that compared to the past nine months or so, I'm feeling as spry AF.  Fingers crossed the 'roid reduction won't send me into some sinister health spin, so go ahead and knock some damn wood. 

You should know that as non-awesome as the Lupus life is, that I laugh everyday.  Yes, Lupus is going to kill me.  Congratulations, you just don't know what's going to kill you.  And it's changed large swaths of my life.  In zero good ways.  But where I come from that's no excuse not to enjoy the hell outta the now.  I'm a staunch do-er of just that. 

Friends always ask what they can do?  Usually, I don't really have a solid that I'm in need of.  I'm gonna cover my bases until DIYing it ceases to be possible.  Period.  Today is different.  There is something tangible you can do to help me, and millions of your family and friends across the nation.  If you've been keeping up with the news you already know that Republicans are trying to advance the repeal of what is commonly referred to as Obamacare.  So, I suppose my favor is, would you each personally send me fifty thousand dollars?  Between hospitalizations, ER visits, MRI's/CT's/X-Rays, doctor appointments (which I once tracked for a 6 month period and numbered in the neighborhood of 130-ish appointments, averaging a medical appointment every 1.5 days), I'd hope that would cover those things.  Oh, and prescriptions.  Once the GOP announced they were taking away the safety net of guaranteeing coverage to people with pre-existing conditions (Fun BBG Fact:  Guess who had a congenital kidney defect, and asthma, and allergies before she ever had [was diagnosed/symptomatic] Lupus? ) I thought I'd better start getting an idea of how long I could live without the safety guarantees and poked around to see how much my meds would be.  I only found pricing on about half of my 'scripts and they alone came in at $3,500/mo. 

Q:  How many months would your kid/parent stay alive if you had to pay $3,500+ out of pocket for their life sustaining medication?

Guaranteed pre-existing condition coverage is the safety net to my health security.  As is, the no lifetime cap guarantee currently provided as part of Obamacare (which also, if Republicans have their way will be revoked).  Again, as you can kinda get a feel for, Lupus (and other conditions; cancer, diabetes, congestive heart failure, dialysis, leukemia, asthma, ALS, MD, CF, MS, etc.,) is expensive to manage and to insure (vs. healthy folk).  But here's the rub, no emergency room is going to just let someone die.  Someone without continuity of coverage (those important guarantees) will simply go to the ER for small piddly stuff #ThisIsWhyYourWaitIsLong (because they have no other access to medical intervention, without insurance they won't be able to afford to see a primary care or specialist or urgent care for non-acute and/or continuing care) or will wait until they are drastically ill, meaning it takes more resources to stabilize them, more costly doctor-y, test-y and longer stay-y resources. (Spoiler: Costs that one way or the other insured people and tax payers will pay for.)  

Overinflated Hospital Charges
Why do you think you see $49.99 for a box of tissues on your itemized hospital bill?  Gold plated facial tissues wouldn't cost that much.  The price is high because hospitals have to cover the cost of those people with 'access to health coverage', but not actual health care coverage because as a pre-existing/life time cap-er they can't afford insurance and/or it is sketchy and doesn't cover things we think of as generally being covered (like, MRI's or EKGs, and other medically things so common laypeople recognize their names).  I don't mean to sound like I'm twisting arms here.  If you're unable to send thousands of dollars to me (and each of your family, friends co-workers, neighbors who a repeal would also catastrophically [health wise, and financially] impact) to keep us whole, and alive, the other option to help is to just call your representative 202-224-3121 and let them know you do not want them to advance their plans to kill me*.

* And millions of other Americans.

As always, I don't expect, or recommend that anyone take any advice or news from some random ass blog on the interwebs.  But, I do expect that you have enough regard for the others in your life who right this very instance are on the precipice of needlessly shortened lives and Google for yourself to find out what is at stake for people in your life, if not you, someday.  (Reminder:  I wasn't always Loop'd up, ya know.  And you don't know if tomorrow you'll find yourself in our shoes.)  

Here's a starter kit:
Be aware that you have the ability to prevent me (and literally millions of Americans in similar circumstances) from dying sooner than necessary if you contact your elected representatives [here] today.   

P.S.  Also, be aware that I find it embarrassing that for the second time this year I (and peeps like me) have been forced to beg for their health and financial security.  Not embarrassing for me, embarrassing for America.  But, here's where we are. 

P.P.S.  If you don't choose to contact your representative, consider this your un-invitation to my funeral.  (Which is gonna be awesome.  I've had it planned for decades and it's a stone cold soiree.)  And my official notice that I am going to haunt your ass.

Related Posts:
I Didn't Shit The Table And Other Real Life Tales Of Lupus ('15 Dec)
Learning Lupus (May '16)


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. 


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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