Undiagnosed but Clear. 

Today, I read an article on the pain of fibromyalgia that I could have written myself. I knew the back pains, the jaw pains. I knew the truly bizarre things the muscles do. I knew the feeling of having had my body’s muscles go through a meat grinder, get salted, and then shoved back in as if they were supposed to be useful again.

I recognized the tales of budgeting against the next day if a work day was horrid. I saw myself in the stories of struggling to get a position that wasn’t approximately “wail like hit dog.”

I muttered, “This is a thing” on reading about fatigue attacks. It was both validation and horror.

I saw way too much of me in the stories about the head fog. I was actually coming out one when I began this entry. What did I fog on, you ask? WHERE I WAS. I didn’t know where I was.

Reading about budgeting leisure time, the feeling that friends may think one is dodging them, really hit. But how do you socialize when you cannot even roll over without making a noise that makes a cat’s mothering instincts go off? (It’s really sad when you know which meow is the “are you ok” meow for more than one cat…)

I tried to find the article again and couldn’t. I’m putting it off to fog, but I have concerns about it. I know it existed—there was an illustration that very vividly described my pain in it that stuck with me. I was going to use the article to show my doctor we need to rethink my pain treatment, that this most likely the Big F—Fibromyalgia. But he’s not the best listener, and the only response I got from my message was a (probably needed) doubling of a medicine usually prescribed for it. But he stops short of a diagnosis.

Right now I just want to rest. I’m not even interested in food. Only rest.

Did I even post #1? Eh screw it. 

This is my Confession 2: Comforts.


There are things I will compromise on, but in the winter there is one thing I will not compromise on, and that is the chance to have at least one nog on the rocks.


No rum. There is only one kind of rum I liked and all I can remember is that it was kind of weak.

I’m not supposed to be consuming alcoholic things right now, anyway.

This is my brand. I’m going to enjoy it while I can.

A nog on the rocks a night. A nice thing I can have at night… With a digestive aid of course. This isn’t lactose free.

Started from the bottom… 

I’m self taught.

Yet, I have the audacity to call myself a photographer.


I started from the bottom. Mom’s old film camera and B&W film and things in the backyard. When things went digital I experimented with the things she taught me using an entry level digital camera. It was like going back to class—which is a funny story. The primer she gave me over the years was so thorough that I was summarily booted from one intro class. I already knew the material inside and out. Unfortunately, the class I needed was two hundred dollars above my pay grade.

So I turned to books, articles, and the good old street beat. From instant Polaroid, to Kodak point and shoot, to now, I’ve gone from simply trying to catch what is in front of me to actively trying to blur the line between record and art.

But it didn’t happen overnight. I had to start somewhere.

Herded By Cats

It appears to be a bad fatigue day. No pain threshold and my pills hit like a truck.

Also, every kitten has mom-meowed at me every time I’ve attempted to stand up and doesn’t let up until I give them an “I know, thanks” and a head scritch.

The “mom-meow” is an interesting thing. It seems to be the way a cat says “?” to humans. (No, seriously, the only way to describe this particular meow is a loud “?”) It comes with an obvious look of concern and is often followed by an “I need nothing but I’m going to follow you until I notice you aren’t trying to overdo it and are safely seated OK no questions” tailing. Ignore it and one is herded elsewhere by attempted group legtangling.

…This is the time for “in Soviet Russia, Cats herd you” jokes. Even though we can’t herd them.

They’re that good at this.

Well, staying down beats back/ab/quad spasms, so…

Insult AND Injuries

So, the OB went looking for the mass and almost knocked me out, right? And he says that if the thing gets removed we might lose that ovary but do you realize there’s also a fucking hernia here

And I’m like “ask again later when I’m not seeing lightning bolts?”

Five minutes later in the room with the books he literally goes down the textbook and

Yeah

It’s also probably already INCARCERATED even and he’s gonna kill my GP for missing it last month before it got here.

___

He doesn’t think it’s the mass causing the pain—in fact after the pelvic almost knocked me out, he was positive. It was why he went through the book and looked at the signs of a hernia (after I’d recovered enough to answer his questions) actually. We’re going to need more exams to see if the thing is benign or something else, but the fact is this thing is kicking from one side to the other in my guts along a hernia scar that is literally the same age as me—the hernia that was repaired in it is older (I WASN’T BORN YET).

___

It gets better/worse: we are having a fuck of a time finding a surgeon who takes my HMO.

Literally my best chance is to blow this thing at work and wind up in the hospital from there.

So yeah, this kinda sucks.

Thank you, Mr Iwata.

The honest truth is that the news late last night that the president of Nintendo, Satoru Iwata, had died from cancer of the bile duct, hit me harder than dropping the man who is now my ex.

At the time I’d been thinking: he’s been a huge part of my life and there’s no way I’m going to be able to go back to things without him. Everything reminded me of him. It hurt, and I was losing my mind on a daily basis.

But that was connected to a distant abuse, a long manipulation. These are things I’m still washing off my skin.

This… Is different.

I never met Mr Iwata. The closest I’ve ever been is Nintendo Directs and the impossibly affable Iwata Asks. But thanks to his work programming so many of my favorite games, he has pretty much been a part of my whole life through his work. Even now there’s a stash of games and things around—I never was able to put down the sticks, as they say where I’m from.

And last night I saw the news, late, in a place that perks my “do a damn two second google search” sense, so I didn’t believe it until I did.

I’d be lying to you if I didn’t say it felt like I had just lost my favorite uncle. And when I found out how it happened I wanted to punch something. We can’t fucking do anything about cancer and it just takes from families, friends, the world.

So, once again I’m stuck in a room with things reminding me of someone out of reach. But again… This is different.

Mr Iwata’s work, both as programmer and president, has had such an impact on my life. Things that have brought me enjoyment,  things that he has said that have inspired me to no end—I will probably be making a compilation of things he has said to keep by my side to keep me going—and the difference is… These are things that I want to be surrounded by. This body of work is a worldwide legacy of perseverance, generosity, talent, humility, kindness, and humor. The world has been changed for the better for his influence. Really, there’s only one thing I can say:

Thank you, Mr Iwata.