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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
  • ......in 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. 



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1 comments:

Anonymous said...

I hope you find what you need to regain health. In your corner!!

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