quirkytizzy: (Default)
[personal profile] quirkytizzy
Let's get the serious post out of the way and maybe later I'll be able to talk about something less...lupusy.

Jesse and I will sometimes go round and round about how far my recovery will take me. About how much of my previous life I'll be able to return to, about how much energy I will or won't have in the years to come. He easily understands the "incurable" part of this disease. It is the "degenerative" part that he seems most troubled by.

As the months go on and I learn more about the disease and how it affects my own body, I can now track symptoms back to my early 20's, if not even a few years earlier. Granted, my kidneys hadn't failed yet, so they were merely tiny licks of what I have today, but they were there.

Add 20 years of no health insurance, no medical care, and an adoration for anything with the words "BACON AND EXTRA MAYO" and, well, 20 some odd years later, you have exploding kidneys. Yadda yadda yadda. All shit we know by now.

Jesse, Pat, and all of my doctors are amazed that my body managed over 15 years with some sort of active(ish) lupus before it all fell apart. They call it an astounding display of sheer willpower.

I don't use the word "willpower." I just state that I'm a stubborn fucking bitch and let it go at that.

But what this means is that on occasion, people mistake my past ability to live with lupus as a legitimate way to measure how well I should be able to live with it NOW (or ten years down the line.) I argue that it simply hadn't progressed to this level, therefore it was easier before and naturally will be harder now.

I also didn't know that this shit wasn't normal. I assumed EVERYONE slapped themselves repeatedly in the face to stay awake at 2 in the afternoon. I assumed EVERYONE spent days and days on end in bed with migraines. I assumed EVERYONE had strange bouts of body pain. Once I found out it wasn't normal? That it was actually HARMING me more than it was HARDENING me?

It suddenly paints those past decades of simply "fighting through it" as dangerous and ignorant. Over 20 years of "just pushing through it" is a huge part of what brought me here TODAY, into such a sorry state of body and mind. I damn near drove myself into the ground - six feet under - that way.

Why would anyone want me to repeat those coping behaviors??? Do they not see that what I was doing was literally killing me, and I am now in even WORSE physical conditions to be trying the same things NOW?

The measuring stick has changed. I don't like it anymore than anyone else does. I'd dare say that I dislike it THE MOST out of anyone. It is incredibly frustrating when people slap that old stick across my palms and want me to use it.

I think Jesse wants to hope. Hope is such a dangerous thing. I dare not place too much weight or importance on its shoulders. Call me curmudgeonly. Call me pessimistic, a nihilist, a negative thinker, whatever. But if this disease is degenerative (and it is) and I must not push my body to the breaking point (like I did), then I cannot just work and push and pull and "hope" it will all sort itself out.

Things are improving. While lower than ever before in my life, the emotional baseline is stabilizing. Despite record-setting setbacks, my kidneys are also chugging along at incredible rates of recovery, 70% operational now. (Or at least were as of a month ago.) Things could go wrong at the drop of a hat, but I am in far better a state than I was eight months ago when the shoe dropped onto my head like an anvil.

Maybe that's luck, or willpower, or blessed, science or stubborn. Whatever it is, though, it will never make this go away entirely. To suggest that I should or WILL be able to act as if it will go away is nothing short of dangerous.

And right now, the most dangerous thing I'm willing to indulge in is fried shrimp. Four now. Maybe another eight months down the line, I can have eight. That's not hope, but it's something.

Date: 2017-04-17 01:21 am (UTC)
dennisthetiger: (Default)
From: [personal profile] dennisthetiger
I kinda know the feeling.

Kinda. Remotely. My issue isn't anywhere near as significant as lupus.

Early last year I was diagnosed with obstructive sleep apnea, and given a machine about the size of a clock radio which sits next to my bed. Since then I've added some lightweight batteries batteries (to keep me going in a power outage and to allow me to, say, go camping) - and this assembly travels with me every time I go to a con, or see family in California, or whatever. (It's to come with me on a near-future train trip, in fact, as I plan on using the sleeper car for fun.)

Thing is, though, is that I've been snoring for a long time as per previous roommates and my ex wife. Even in my teens, my brother (who I shared a room with) would complain of this clicking noise I made every time I breathed - which tells me I've been battling a thing that keeps me from breathing in my sleep for over two decades. I guess it's possible I had this in my childhood - but back in the 1980s, as far as anybody was concerned, sleep apnea is something that only men in their 40s developed. (Now they have masks for children, and I see stories all the time of toddlers learning to sleep with a face mask.)

In all this, I don't understand what you go through with lupus - but you certainly have my sympathy.


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