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
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.|
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,
Until I started having chest pain. I wouldn't have admitted it at the time,
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.
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.
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
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.
We have 22 internal organs keepin' us alive. Lupus is already attempting to pick off 2 of 'em.
(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
I'm discovering that the Loop requires a lot of adaptation, concessions and yielding. Frankly, waaaaaay more than I'm comfortable with.
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,
* 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