Lupus: To boldly let go of what I’ve never let go before

kirk-pub

Yummy, no? So in charge.

On those occasions when the hubs and I want to watch TV together but can’t agree on a new show, we often fall back on the original Star Trek. I’m not 100% sure what’s in it for him, but for me, it’s my first love from when I was a wee 6 year old: James Tiberius Kirk, captain of the Star Trek Enterprise, as it voyages across the universe on its five year mission to bring a thinly-disguised Judeo-Christian American way to planets of hot green ladies.

Recently, we watched an episode whose name I forget, but could have been called Triage (it wasn’t, because Star Trek episodes had either dramatic or punny names). Kirk and team beamed first to an enemy ship, which blew up. Nail-biting moments before said explosion, they beamed to a hostile planet. On this planet, they kept having to run from one terrifying situation to another. Kirk’s “plan” seemed to consist of, essentially, not dying. Getting from fiery Point A to smoking Point B, rather than to safe and non-exploding Point Home. At one point, Chekov asked him about this (rather petulantly, it must be said). Kirk responded (somewhat tetchily) something to the effect of, “well, we’re not dead, are we?”

kirkgorn

Does this look like the time to be worrying about anything other than killing the Gorn?

I realized later that this is a lot like having an autoimmune illness. Before I got sick with the MCTD, I thought that everything had an answer and giving up before figuring out a health question wouldn’t have occurred to me. Now, these many years down the road, I’m more…not sure if “relaxed” is the right word, but it’s in the ballpark. I’m now ok with getting from Point A to Point B, and knowing that I might never get to Point Home. Or even knowing what Point Home looks like. I’m not dead, right? I have to solve the fires, and the explosions, and triaging the most critical issues is more important than knowing all the answers all at once.

When I first got sick, before it was diagnosable even as only the lupus by itself, I was not able to say this. I didn’t know this was even something to say. I thought if I read enough, saw enough doctors, tried enough things, I could get all the answers, fix all the problems. Now I know that it’s ok, imperative even, to let go; to realize that for every answer I find, there will be ten more questions (I’m dying to reference the Hydra but that’s a whole nother storyline) and I can either make myself crazy or understand, and let go of what doesn’t matter.

 

Oh, for God’s sake, Grammar: Why it’s not “an user”

grammar-owl

Grammar Owl says: You never stop learning, especially in English, where the rules are “rules”

I was working on a piece for a tech client today when our friend Grammar surprised me. So much so that I had to run upstairs and interrupt the hubs (who also works from home) with, “Honey, I need to ask you a grammar question.”

“Me?” The hubs is a finance dude. I’m the writer chick.

“Yeah. Real quick.”

“Mmkay. Sup?”

“The letter U. It’s a vowel, right?”

“A E I O…U. Yeah.”

“Ok. So it would be ‘an umbrella.’ Right? And ‘an umpteenth.’ Right?’

“Right…”

“But ‘a user.’ Right?”

“Right. Huh.”

We puzzled over it, figured out that if the letter sounds ‘hard’ then it becomes like the letter Y, the “sometimes” vowel, and you use “a” instead of “an.” I moved on with my life.

The weird thing is, I’ve been in tech marketing for…you know what, you don’t need to know that I’m about a hundred and five years old, suffice it to say that I’ve been in tech marketing forever and have typed “a user” a bajillion times and apparently it has never bothered me before. It bothered me today. I’ve also been feeling kinda lupus-y and words have gone missing a bit over the last week, which is probly why I enlisted the hubs instead of just googling it, like I normally would.

I am generally an apologist for the weirdnesses of English grammar. I can usually find some sort of excuse that makes enough sense, and often reveals a strange beauty, in the odd turns that English takes. But this is just stupid. I feel that the whole vowel/an thing should be binary: it’s on or it’s off. Make a decision and commit to it, English grammar.

Allow me a sidewinding side note, if you will: we moved to the States when I was a kid, and English was my fourth language. (For the record, my native language is German, which happily lives with every decision it has ever made. You know where you are with German.) It seems we moved here right after the rules of grammar had been taught, so I never actually learned the weird “optional” vowel thing. It still trips me up, I never remember it. When the hubs mentioned it this morning, for a hot minute I looked at him like he had lobsters crawling out of his ears, then a soft bell started clanging in the recesses of my brain. “This is one of those things you are supposed to know,” it rang, “it’s a real thing. It’s a real thing…” Sideways sidenote: It seems they taught the vowel trick about the same time that they taught how to measure stuff – on both sides of the ocean. As a result, I know neither the metric nor the imperial system. I know my stride is about a yard, but you might be surprised to learn how infrequently that comes in handy.

Accentuate the…negative?

 

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It occurs to me that people take every opportunity to close doors.

Recently I was driving past a Mediterranean restaurant with a relative. I mentioned how much I liked it, to which she said, “Oh, we don’t like that place at all.” I expressed my surprise, as everything I’d tried there was lovely. She said “Yeah, we went there once. We had a cookie and a coffee, it wasn’t that great. I don’t get what all the fuss is about.”

Well, ok. If you went to a bakery and had a meh cookie and coffee, pass judgement. But if you went to a Mediterranean place, maybe try the kebabs before you write a food column.

Another relative of mine (I need to stop talking to people to whom I’m related) took on board my news about a potential career change with…how shall I put this…a crap attitude. Rather than being excited for me, she gathered info about starting salaries, and headed her email to me with the words “Whoo boy! Hope you’re ready for this!”

Never mind that when you have a debilitating illness and find a Plan B to be excited about, the last thing you need is some jerkface raining on your parade. Or that I’ve probably done some research and know that starting salaries in this field aren’t rock star money.

I could go on, cite examples featuring people to whom I’m not actually related. But you take my point. I’m sure you have your own examples, perhaps involving your own relatives.

I’m not a Pollyanna. I’m all about making informed decisions. But there’s a balance.

There’s a great quote by Tony Robbins, the inspirational speaker with the huge teeth: “See it as it is but not worse than it is. The answer is not positive thinking. The answer is the truth.”

I’ve always bristled when I hear people say “I expect the worst, that way I can’t be surprised.” It seems like such a sad way to live.

Why do so many people seek out the negative? What’s the payoff?

My feeling is that it’s fear. Fear of disappointment, perhaps fear of being disappointed yet again. How often can you look for good, not be rewarded and bounce back, before the cracks form?

Is it intrinsic to a person, this outlook? Does it come from the rub of life on a soul? Or is it perhaps a little of both?

Whatever forms it, I find this outlook cynical. I see only closing doors and sadness; people with lives made smaller, lives which they themselves choose to cut into tighter and tighter circles of experience every moment.

And – I could be overthinking this, I’ve been known to do that – I wonder, I worry, where does this smallness of desired experience lead? Does experiential fear extend to cultures, to religions, to people?

The smaller circles satisfy the fear, the fear continues the need for ever smaller circles, and so the (poor, maligned) snake bites its tail.

We grow in discomfort. We grow when we learn new truths and try new things. We need to try the kebabs (we may not like them, or maybe we will. We just need to try them.). We need to support each other in trying new, scary things (we may fail. That’s ok. We can get up again. It’s better than regretting never having tried.). We need to realize when things aren’t as bad as we may reflexively think they are.

The world gives us enough pain and bad news: we are here, for each other, to remind each other that there is also joy, and growth, and newness.

 

Product review: the best cooler for travel with refrigerated medication (plus 2-for-1 offer)

Just a quick tip.

I take two meds that have to be kept refrigerated between 36 and 46 degrees F. When traveling, this becomes a tricky situation.

Recently, I flew overseas, which meant I needed a cooler that could reliably keep my meds above-freezing-but-not-by-much for 14 hours home-to-hotel. The hunt for the right cooler took a week. (Yes, you WOULD think that the coolers that the drug manufacturers provide with their medications would work but that’s just crazy talk.)

I learned so much about insulin cooling systems, which totally don’t apply in this situation, can I just tell you. And mini refrigerators. And Yeti brand coolers. And and and.

Ok and then I found Polar Bear Coolers. They have medical coolers in every conceivable size and they’ve thought of everything. The smallest one was perfect for me. It has this cool “bullet” thing about the size of a thermos that has a cold gel outer core which holds my syringes perfectly. No ice touches my meds as they travel along in perfect above-freezing-but-not-by-much splendor.

gel-bullet

The Polar Bear medical cooler “bullet” – big enough to hold a 12 oz soda can

They also have the most hard-core ziploc bags I have ever encountered. An actual yeti could not break out of one of these, let alone an ice cube. That bullet nestled inside these impenetrable, ice-filled ziploc bags stilled my paranoia that I was going to ruin me n my honey’s European getaway with a stupid flare.

I ran four countertop tests with four different thermometers (yes, we do have a lot of thermometers; maybe the world isn’t out to kill me but why take the chance?) before taking my new cooler live, and each time it performed like a top. I think they’re guaranteed to hold their temperature for 10 or so hours (don’t quote me); I reached my destination with my ice still intact but of course YMMV.

Right now, Polar Bear is having a 2 for 1 sale. They don’t just sell medical coolers, so you could like go on a picnic or boating or something else that’s fun and tote along your cheesy comestibles if you so chose, knowing they would stay nice and cool for you. The promo code for the offer is 2112; the offer applies to soft coolers only (not sure what that means exactly but it’s better than no free thing).

I know this sounds like an ad. It’s not. I totally found this cooler by looking at a million web pages and paying my own scarce moneys for their product. It was really just that they make a super great product that actually worked the way it was supposed to that made me think to write about it. I mean, I wish they paid me, that would be swell.

Also, in looking at their site today, I see that they don’t have a separate product page anymore for medical coolers, but they do still have the medical bullet (see the link above, under the picture). All the medical cooler is, is one of their regular coolers with the bullet and some ziploc bags, so just email them and they’ll get you sorted. It’s all about the bullet.

 

9 things I wish would stop but if they don’t the world probably won’t explode. Probably.

Make. It. Stop.

Make. It. Stop.

  1. When people compare a happy couple to Romeo and Juliet. Read the damn play.
  2. Morons who tell me that diet, not medication, is what I should take for my autoimmune illness. Do you tell diabetics to forgo insulin, or asthmatics their inhalers? No? Hm. Interesting.
  3. I recently saw this signage at the mall: “Ultra-skinny super-high waisted jeans!!” There is nothing here I can get behind.
  4. People who buy awesome sports cars and then DRIVE SLOWLY. Yeah, I’m talking to you, Mr I don’t deserve my Dodge Challenger. Pull over and trade cars with me. Or just walk home. You won’t notice a difference.
  5. Nail polish chips. Once I get one, I fuss with it until the entire mani is shot. I’m an all-or-nothing girl.
  6. The General car insurance ads. If you don’t know what I’m talking about, you are blessed (and in the true sense, not in the hashtag sense). That weird little cartoon dude freaks me out.
  7. When talking to someone the other day about confederate flags I referenced Jim Crow; he asked who that was. I don’t have much more to say here, mainly because I’m still speechless.
  8. This is the last season of America’s Next Top Model, people! I literally just this second rewound the TiVO THREE TIMES so I could try to understand what the hell Tyra is wearing. Still don’t (a leotard under tights?). NOW where am I going to see people smizing, showing off their boom-booms (not what you think, if you’re thinking that), getting crazy dramatic, and working so hard to win a prize that doesn’t get them anything at all?! I am bereft.
  9. That nobody has yet invented a laundry additive that will make my clothes repel cat fur.

Redrawing the boundaries

Kitten needs puppy to understand the need for boundaries

I’ve been gone a while because I’ve been processing. And I needed a break. And it’s not like this is a job, right? And it’s not like my readership of millions was wondering, Oh no, where did she go?? But mostly, I was processing.

Welcome to the results of my internal therapy session. Not sure how interesting it will be for you. But what the hey.

See, I’m the Girl Who Lets Things Go. I was raised in a home with a parent with PTSD and wicked ADD; literally he would forget from one moment to the next what he told me to do. Acting on the “wrong” command – one already forgotten – could generate bizarre behavior – frustration, anger, and so forth. Turning to the other parent would only result in a lack of help and silence in an effort to present what was termed a “united front,” which was confusing, to say the least. With no rational outlet, I learned to Let Things Go. The other options were parenticide or insanity.

Letting things go when you have an autoimmune disease can be good for you. Stress is one of the top contributors to flares. So there’s that.

But in personal relationships, letting things go can be extremely damaging; perversely, the friction from this behavior can become terribly stressful. Because I tend to shy away from telling people when they do things that bother me, I often find footprints all over what I thought were clearly drawn boundary lines.

My problem, as I have come to realize, is that I have been acting as though people are psychic.

This means that I assumed (ha HA!) that people will behave towards me as I believe I behave towards them. There are so many assumptions in that sentence that I’m not even going to bother unpacking it. And when they didn’t just do what I wanted them to, I figured that they could tell by my brain waves how I wanted them to change. When they didn’t, I was annoyed, hurt, upset, angry, etc.

This exercise has forced me to think hard about what I consider acceptable friendship behavior. It was weird: we don’t, culturally, tend to work on friendship. It’s supposed to be something that “just happens.” And maybe if you’re not like me – a complete introvert with an illness that keeps her indoors a lot and therefore needs every single friendship to deliver depth and meaning as well as shoe discussions and celebrity gossip – they do “just happen.” But for me, they don’t. I’m a pain in the ass.

So yeah. It’s been a long processing, a careful mulling. A healing one. I’ve realized that there are several people I have in my life who don’t appreciate me, who don’t make me feel good when I spend time with them. People who use me for what I can do for them, not who value me for what I am (I don’t think they’re doing this consciously or anything. But I’m the only one I can fix.). Those are people I shouldn’t spend time with.

It felt like it should be a scary decision to make: I don’t have many friends, and there are times when I feel so terribly isolated with this illness. But once I made the decision, I felt awesome. Committing to reaffirming relationships with people who truly care about me, rather than simply spreading myself across the maximum available number of people-endpoints because I’m scared of…what exactly? Loneliness. Irrelevance. All those things.

It was actually more scary having the needed and honest conversations with some people to right some ships. I have a bad habit of walking away from salvageable relationships because I think I’m beating them to the punch (yeah, more backstory there, but you don’t need ALL the drama). But it turned out ok. I’ve learned now that if I open my facehole and TALK TO PEOPLE ABOUT THINGS then we don’t have to rely on mental emanations to do the heavy lifting and that’s probably for the best.

Credit where it’s due: this all started way back in September, when I heard this reading at a church service. I won’t include all of it coz it’s long, but it starts as so:

Great Spirit of Life,
As a new year begins, we turn inward to reflect about the state of our lives:

  • What lessons have we learned in the past year and which new ones now call us forward?
  • To whom do we still owe an apology or expression of thanks?
  • And with whom must we draw fresh boundaries?

There’s so much in these three bullets, penned by a woman named Kate Lore. The last one resonated with me most immediately, but I’m eager to also act on what “calls me forward,” illness be damned. And I know I owe apologies and thanks, both in vast numbers. I’m working on both.

I owe one apology to myself: by not being mindful of my boundaries, by being the Girl Who Let Things Go, I let myself miss out on so much. From now on, I’ll be the Girl Who Stands Up for Herself.

Fat, chronic illness, shame and happiness: parsing it out and learning a lesson

Fat shaming vintage image

I’m pretty aware. Sensitive. Inclusive.

Translation: I can buzz-kill the crap out of things.

I’m PC as all get-out when it comes to the rights of women, the differently abled, marginalized races, the transgendered, etc., etc., …. you make a “joke,” I will fix you with my pointy glare and say something biting yet factual which leaves neither of us in any question about the state of our relationship. I was raised on Sesame Street and live in a 1980s Benetton ad. If you don’t want to hold hands and sing Kumbaya, there’s the door.

benetton2

But I have my blind spots. Some I know about and am frankly fine with. This is about one I was blind to (a double blind, if you will).

I was listening to the radio the other day and they were talking about this Whitney person who has a show called My Big Fat Fabulous Life. She said (I’m going to paraphrase so I can (eventually I swear) get to the point of this thing) that “fat” is just another descriptor, like “tall” or “blonde” and should not add or detract from how you perceive a person, but just describe them.

She then went on to add:

I have a campaign called the “No Body Shame” campaign … It’s just to show people that it doesn’t matter what we feel ashamed about because we all have something. If it’s not their weight, it could be a chronic illness, disability, race, gender, sexuality, and people try to make us feel ashamed about those things.

I realized that happiness is here now in the body that we have now and the life that we have now, and there’s going to be a lot of resistance to that but if you don’t fight for your happiness the only person who loses is you.

I was in the car when I heard this, and was trying not to hit other cars, so I wasn’t paying 100% attention to the radio. All I really heard was that someone was appropriating chronic illness and munging it into a conversation about shame and fat, and right there, in my car, I got on my high horse (and I drive a Mini, so that’s a pretty amazing feat if you think about it).

“Um, lissen lady,” thought I upon my horse in my car. “You can stop being fat. I cannot stop having this chronic illness (hence the word chronic). So stop co-opting my issues to make your issues ok. Maybe eat better.” So saying, I patted my horse, and myself on my back.

Then I went home, and looked up the full quote. Ah. Ah-hah, even.

Here’s the thing. I don’t feel ashamed of my illness. I never have. And I would have never had a spare minute for anyone who would have tried to make me feel ashamed of it. But I know other sickies who have had to work through this issue (and I’m not knocking them – I have my issues, believe it. This just isn’t one of mine.). And if I look at the rest of the quote, and what she’s communicating: there’s a lot of common sense there, a lot of sensitivity, a lot of kindness.

And it also gives me pause to think. I have never, knowingly, fat-shamed anyone. But I’ve thought things (“She looks so cute…for her size.”). I’ve looked in shopping carts and mentally replaced the crap food with carrots (which is oh-so-clearly my place, right?). I haven’t cut an overweight person the same slack I’ve cut others – including myself, probably most of all.

Is fat the last acceptable frontier? Are overweight people the last people it’s ok to be critical of, to judge, to be better than? If someone else is worse than me, does that make me better? Since I am sick through no fault of my own, does that make me better by default? If I am thinner and chronically ill but a mean, small-minded person who tallies up things like “better and worse” (because it’s healthy to quantitatively measure and compare people as though they were inanimate objects, like car tires or ceramic figurines), and she’s a bigger but nicer person spreading a meaningful message about acceptance and happiness, who is actually a better person?

Ohhhhh. So the worth of a person isn’t measured on a scale? Well now. Ain’t that a thing.

The challenge is for me to train myself to think about overweight people differently. Judgments are based on assumptions, and assumptions are based on stories we tell ourselves about people. What am I assuming when I see an overweight person? And what business is it of mine, anyway? Why do I have to tell any stories in my little head? It’s not like the world is panting for one more judgment, one more bitchy call. I can choose, instead, to simply accept. Accept that another person’s needs and reasons are as meaningful to them as mine are are to me (hey, what a concept. Treat people like I want to be treated. With simple respect.). And by so doing, generate a sliver less negativity in my brain (a brain that sincerely needs all the help it can get, ya know what I’m sayin?).

Suddenly it doesn’t sound quite so complicated.


When I said earlier (in my car, on my horse) that “You can stop being fat,” it’s worth noting that I actually have no idea if she can. For all I know, she has an illness or something. But up there on my high horse, the oxygen was thin, and my thought processes weren’t very good, and I could really only think about things that would contribute to the snarky little point I was wanting to make.

This also has nothing to do with whether or not she wants to stop being fat, something else I have no idea about. Maybe she’s happy. Maybe she’s healthy. There are skinny people who aren’t fit, you can be skinny just by not eating. That’s not healthy. There are large people who exercise a lot who are healthy who have both muscles and fat. I suppose I could learn the answer by watching her TV show but I already have so many conflicts on my TiVO that adding yet another show seems fraught with peril.

Image source, image source

Lord have MRSA

If you had to pick a time to be my face, you wouldn’t pick right now. I’m healing from the last of three MRSAs in my nose, one after the other boom boom boom; I just had a cold sore that made me look like I was auditioning for the part of Toucan Sam; and I’m breaking out coz apparently I was mean to people with autoimmune illnesses in a past life or something and turnabout is a laff-riot.

Image of Toucan Sam, the cereal mascot

Follow my…beak? Who thought this made sense?

[Sidenote: Whatever happened to Toucan Sam anyways? Is he on the endangered species list and thus unable to participate in ad campaigns? Or did they just figure out that having a bird say “Follow your nose” while pointing at his beak didn’t make sense? But for serious. Where did all the good cereal mascots go? Count Chocula, Frankenberry, the Sugar Smacks Frog (which I think they renamed Honey Smacks because health)…where did all my Saturday morning cartoon companions run off to? I’ve seen terminally chipper Tony the Tiger and that stupid Honey Nut Cheerios bee recently, but they’re just annoying and healthy. You know those health fanatics just want you to join their running club. Count Chocula was all about a) chocolate and b) sucking your blood. That is some seriously goth cereal, man. I can get into that. And Frankenberry – a pink golem? I can dig it. This is a dude who cares not a fig what you think of his fashion choices; if you don’t like it, he will simply kill you and add your limbs to his body. That is living hard core.]

But I digress. Things are feeling like they are fixing to go south. Do you know that feeling? When everything feels as though it is teetering on the edge of the cliff and if a light breeze should arise, all will plunge over the side into a flare maelstrom. It’s unpleasant.

Image of a smiling Pablo Escobar being booked into jail

Pablo Escobar? What’s he doing here? And why is he so happy? All will become clear. Honest.

The MRSA is an ongoing occurrence. Every single person alive has staph cooties in their nose. It’s a thing. But if you have a compromised immune system like I do (my immunoglobs are low), and you get a tear in your mucosal lining (which is easy when your skin is dry like from allergy meds), those germs can get into that cut and you can get an infection. If the staph is resistant to most antibiotics, you have MRSA, which is a challenge to kill if you don’t get it early (kinda like Pablo Escobar, who apparently was very difficult to kill because they waited until he was strong and entrenched. He was also a drug kingpin whose empire dealt with cocaine, which can go up your nose, so you can see how on-point this analogy is). I looked like Rudolph the Red Nosed Lupus Girl there for a while.

[Sidenote the second: Me and the hubs were talking about how poor Rudolph is as an object lesson for kids, assuming you don’t want to raise jerks. Consider: here’s this poor reindeer with a birth defect, and not only do all the other reindeer mock him all year long, but the guy in charge doesn’t do anything to stop them from doing so. Then one night, it’s all foggy, so what do they do? “Oh Rudolph with your amazing nose, please come help us!” not “Rudolph, we’re so sorry we called you a freak and a weirdo and never let you hang out with us!” And what does the guy in charge do? Does he punish the bad reindeer? Nope. He just says “ho ho ho” alot. Jerk.]

ANYWAY.

That “about to flare” feeling is hovering just around me, just above me. My bones are pregnant with the feeling; just sitting here I can hear them grinding with it. Do I up the pred? Do I stay where I’m at? It could resolve itself. It could erupt catastrophically. It could do either, and for absolutely no reason whatsoever.

I’m not worried, although I am a little tired. I think perhaps I’ll watch some TV, maybe play with the kitties for a bit. Do some research on the disappearance of cereal mascots (perhaps there’s a serial cereal killer afoot?!).

Things will be what they’ll be. And I’ll roll with it. My red, red nose will light the way.

Image of comic

It’s super amazing how easy it is to find images like this. Search on “Cereal Killer.” Truly, there are no new ideas. There are, however, some really entertaining ways of illustrating them.

Examining my purpose: The Encouraging Thunder Award

Jessie at This Lupus Life nominated me for the Encouraging Thunder award, which recognizes blogs that are inspiring and encouraging to their readers. I am super startled by this. You sit at your laptop and tippity-tap away at your little thoughts, and somewhere out there, you touch somebody. Which is amazing and cool and wonderful. Thank you, Jessie. You too are amazing and cool and wonderful. You are smart and strong and your dogs are adorable. Thank you for this honor.

encouraging-thunder-award

If you don’t know This Lupus Life yet, you should totally go check it out. You will learn and laugh and see cute animals, so it’s basically a win-win-win.

How the Encouraging Thunder Award works: in your post, you should talk about your purpose in blogging. This is actually one reason I’m so delayed in posting this (Jessie nominated me a *while* ago). I started thinking about my purpose…which made me think about what my purpose was when I started, and then I got all thinky. And then life happened, as it does. And then I was all: huh, overthinking much?

So ok. My purpose. Back in the day I led a lupus support group. I started it because there wasn’t one in my city. I don’t want to say too much negative here…it was a burden. People are thoughtless and insensitive, and I grew to hate it. I lasted a year. I thought I would miss it, but the second I slipped the yoke, I could feel a massive weight dissolve.

Being free of the support group did not mean I didn’t want to share, however. About a year later I thought, well, maybe it’s time to stick a toe in the sharing water.

But I didn’t want it to be All Lupus, All the Time. Because it’s not like that’s what I’m all about. In my regular life, if I’m not flaring, it’s not like I talk about it non-stop (and if I am flaring, I’m often not talking at all, but I sure am thinking really loud). I talk about shoes, and books, and cats (two in particular). So the blog was supposed to be an outlet for all of that, especially since I can’t work very much anymore thanks to the illness and I don’t get to talk about stuff with people at work (jiminy how I miss that).

Somehow however this blog has gotten to be like 95% lupus. Which is another reason I’m so thankful for this award. It’s forced me to recalibrate. I want it to be, like the name of this thing states, NOT another lupus blog. More glitter-centric. More cat-tastic. More shoe-licious.

So thank you, Jessie, for the award, and for the reminder. For re-purpose-ing me.

And now it’s time for to pay it forward. Here are some bloggers who I think are just awesome:

  1. The Little Wolf Hunter: Always great information mixed up with inspiration. 
  2. Courage, Grace and Humor: Her story-telling is amazing. I don’t want to go camping, but I wouldn’t mind sitting around a campfire with this lady.   
  3. Yarn, Books and Roses. This woman’s knitting is ahhhhhmazing. I don’t even knit and I find her knitting stories so interesting (and they often feature cats). Plus she talks about so much more. I’m not doing her justice. Just go look.
  4. Undiagnosed Warrior. Having a chronic illness sucks. Having nobody be able to tell you what it is: suckage times ten. Her indomitable spirit will amaze you. 
  5. RE[SOL]VE. Her writing just makes me happy, what can I say? Maybe it’ll make you happy, too.

If I nominated you and you choose to accept the award (I know, we’re all busy or tired or some combination of the two so don’t feel like ya gotta), here are the rules:

When you get this award, you can:

  • Post it and the logo on your blog
  • Pay it forward by nominating others

You cannot:

  • Abuse or misuse the logo
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I am a moron: CNS lupus strikes again

lupuscns

Good lord I’ve been so sick lately. Just ugh. And I could NOT figure out what was wrong with me.

I googled my symptoms: headache dizzy nausea digestion vision problems hot <ENTER>

Hmmm:
>Brain tumor
>Diabetes
>Pancreatic cancer
>Dengue fever
>Menopause

mmmmmmmmm….nope. I don’t want any of those. Thanks for playing though.

I look askance at my new face lotion. Is my new hair stuff to blame perhaps? They’re both “natural”…but then so is arsenic, and I’m not putting that on my head.

God I feel horrible. So nauseous. Head hurty so bad. But not migraines. So dizzy. Plus…I’m smelling weird things. And I’m hot. And cold. Ugh. And then I fell asleep for two days. Woke up…aaaaand rinse and repeat. WTF.

Google again. This time, added the magical word “lupus” to the end of that search string. And…<ENTER>…

Ah hah.

God I’m a moron.

I HAVE LUPUS. I FORGOT.

Last time I flared bad, I had “normal” lupus – weird for me – where my joints hurt and I was tired n stuff. Or maybe I was having a RA flare. Or maybe some from both columns. Autoimmune dim sum, if you will.

This time, I’m having a flare from CNS lupus, that thing that so many doctors like because it means they can put me in a pigeonhole of “oh you have that lupus that nobody understands really, so we can just throw meds at you until you go away,” weird-ass lupus.

My rheumatologist (who is not like that) told me once that in 10 or 20 years, CNS lupus will likely not even be called lupus, but have its own name (and presumably treatments), but right now they don’t know what else to call it, so we just get jammed in with normal lupus people.

ANYWAY.

CNS lupus is lupus that affects your central nervous system. When you flare, antibodies attack the brain, rather than / in addition to your kidneys, liver, joints, and / or skin. The process of getting all inflamed can compress nerves in your brain and slow or block oxygen and nutrient flow to parts of the brain, which makes you (or at least me) dumb. I’ve read it can lead to both cell death and temporary impairment. Go temporary impairment! But I do know that I used to be smarter generally than I was before I got sick. Well. Watcha gonna do?

CNS flares can lead to cerebritis, aka brain inflammation, which can be anything from mild to devastating. I’ve had it mild –  unable to do basic math, judge spatial stuff, remember the names of the Obama girls, things like that. CNS lupus folks are also more likely to have issues like strokes (which is, incidentally, how I learned I was sick).

And of course, the central nervous system isn’t just your brain, it’s your entire nervous system. I’m used to having tingling in my extremities, but that didn’t happen this time. Instead I got the dizziness, wicked nausea and other stuff I won’t share because I’m a lady.

So yeah. I finally (I mentioned the dumbness, yes?) remembered that I have lupus, jacked up my prednisone, and now, two days later, can turn my head to the side without wanting to throw up. Better living through chemistry.

If CNS lupus is a thing for you, don’t be a moron like me. Get the inflammation down. The line between not being able to do basic math and stroking out may not be that thick. Best not take a chance. You only get the one brain.

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