The Language of Lupus

It’s interesting around here…and not always in the ways you want it to be.

For example, we’ve lost two of our dear wee hamsters in the last six weeks. Cycle of Life kind’o’stuff. Yes, there’s the family aspect of your pets…yes, there’s the sorrow and the offerings made.

Yes, there’s the cradling of their little, lifeless bodies while younglings come to grips with the cessation of All Things.

But. We’re not just “a family.” We’re a family who deals with disease every single day. The possibilities and potentials. The setbacks and downfalls.

So, when your younglings are surrounded by their friends (because why shouldn’t this happen during daycare hours?) holding their beloved pet…there is bound to be The Realization.

The Realization came to my littlest twin, Ethan. As he gazed lovingly upon Cappuccino’s body, tears streaming down his face…and you set out to do your motherly Lion King, Circle of Life, duty…and are met by the one statement you won’t ever be prepared for:

“So, when you die, Mommy…will your body be cold like this, too?”

o.O

Fuckernackles, peeps.

But, this was before my conversation with my primary care physician.

This was after blood was drawn and results were awaited.

This was before I learned that…

The chemo worked.

The agonizing pain and nausea and generally feeling like a big bag of smashed assholes whilst still having to do All The Things because that’s what an on-your-own mother has to do while working (some weeks until 9:40p.m.) and studying college courses having had poison forcefully pumped through your veins on a schedule so hardcore the team in Toronto had to calculate dose/frequency to the level of “how much can we administer that could possibly beat this shit down without causing the cessation of cardiac function?”

That.

Weeks of treatment.

Weeks and days and hours of wishing it all would just………stop. All of it.

Anti-body screens? SED rates? Proteins?

FYI shit: The Johns Hopkins Lupus Center: Lupus Blood Tests (everything you can’t pronounce and don’t need to, but are important nonetheless)

SPOT. ON.

Yeah, my blood glucose levels are still a bit skewed. Need to keep a close eye on that. But, the numbers are coming down and we’re more relieved. Much more.

The term that’s used is:

qui·es·cent
kwēˈesnt,kwīˈesnt
adjective
  1. in a state or period of inactivity or dormancy.

Being clinically quiescent with Lupus means that there are no active symptoms and no active systemic activity. No means of pharmaceutical treatment are required.

Could you call it “remission?”

Well, it’s a harder term to employ with Lupus because it is a systemic disease of unknown origins: Lupus will always be there. Dormant, maybe. Inactive, yes. But, like managing Diabetes…one’s pancreas doesn’t just simply start working again. Ever. You manage it, and if you’re asymptomatic, you’re managing it really damn well.

Here’s a link or three of medical journal articles on the subject:

Remission of Systematic Lupus Erythematosus

Sustained Remission of Lupus Nephritis

Remission of proliferative lupus nephritis following B cell depletion therapy is preceded by down-regulation of the T cell costimulatory molecule CD40 ligand: An open-label trial

As you can see (or not, I’ll just tell you)…”remission” is often “short-term” in the majority of patients with Systemic Lupus Erythematosus and accompanying lupus nephritis.

BUT: This is the thing…five years ago? This wasn’t even on the gameboard.  Not even an option.

Not even a little bit.

But, if my bloodwork, which is still regularly scheduled over the next several months, remains the same (we can hope)…one can call it a “remission” of sorts.

What happens if it changes and markers and levels and numbers increase/decrease where they shouldn’t?

Well, that’s the dandy of having a healthcare team spread out between Ottawa and Toronto. They know their shit. They accommodate the Everything and they are getting The Shit done. We’ll deal with that as it happens (or not). Another set of infusions, perhaps.

Does this mean I don’t have Lupus anymore?

Headdesk

 

 

 

 

 

NO.

It means that for right fucking now…I made Lupus my bitch.

BOO-YA! \m/

*middle finger salute* to you on this fine day, Lupus.

*middle finger salute* to you on this fine day, Lupus.

 

 

Emotionally?

If I can do and overcome this…I can fucking do anything.

That, my friends, is a true story.

\m/

7 responses to “The Language of Lupus

  1. CAN I NOT LIKE THIS ENOUGH! Im so proud and happy for you! <3<3

  2. I have watched you struggle, carry on, celebrate, struggle some more. Lather, rinse, repeat.
    But I have *NEVER* seen you give up.
    You live the title of ‘chronic bad-ass’, and I am all that much more blessed to know you for it.

    Way to go Warrior. Way to frakkin’ go!

  3. Brynn, this post is the best thing I’ve read. I’m freakin’ overjoyed for you and your kids.

  4. You Owned it, you mastered it, you are the embodiment of “owning it” and have attained the right to call it your bitch, and in my eyes you, Brynn, you deserve a break, you deserve a time out, you deserve that and more. On the global cosmic scheme of things, you are now on “vacation”, and everyone who is on vacation does not have to think of the hard stuff for a while, so for a while, you have one less thing on your shoulders… and I hope it stays the hell away for a very long time! **Sprinkles fairy dust over Brynn**.
    You are my hero, you all ways will be, and WOO HOO!!!! (wish I was more eloquent but you know what I mean).

  5. Halleluiah !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  6. Pingback: Friday #gladitude | Lupus Interrupted

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