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)



Anonymous said...

I called

For you, my dad& my niece, hope it helps
- JC

BigBrownGirl said...

Thaaaaaaank you, JC!! I hope it helps too, I mean, at some point representatives have to start, um, ya know, actually representing the will of their constituents, right? (crosses fingers and awards you a GOLD STAR)

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