Is there Cake? I Was Told...

Or: Is diagnosis fatigue a thing? I do not want another thing...

Do not be surprised if posts that are not particularly timely start showing up as I attempt to clean up my drafts with a “put it up or dump it” eye. Except the Angel Pillows piece. It makes me shudder, but I need to do it.  Sometime. Dammit.

I have to do something to not feel useless sitting in my office chair to re-situate my SI Joint Dysfunction. That mostly looks like doing nothing and can rapidly deteriorate into actually doing nothing. Well, or what other folks might call nothing but I call Internet Rabbit Hole/Tabspolsion Learning Time!

I recently realized that after the first couple diagnosis I received, after the first couple of dozen prescriptions and recommendations and all of that - I stopped being Super Learning Gimp. I did not just quit caring, but it got kind of numb. Whatever. What does this mean? What do I have to do? What do I have to take? Will it get better?

Is there like, cake, for people that get long lists of unspecific symptoms diagnosis? Because I am really hoping there is cake because this fucking sucks. I did plenty of testing, where is the cake?

Come home and say “looks like they think I have blargity blarg.” They ask what they can do at home, because my family is awesome, but they kind of get the blank slump I get now too. Then we just kind of sit and commiserate in the suck for a little bit and move on with this new word in our lives.

Ask the pharmacist to check for interactions because I can fucking care less at this point. Sure. 

Wait for the referral call for the specialist which will do one of two things: tell me they cannot help me and bounce me back to my GWP, or start running tests and writing more Rxs and suggesting life changes. Whatever. All of which I will heed, it is just rare to care about it anymore. Or maybe not care, but have an emotional reaction other than the mild cry I am sure to have that night.

Which is why I hardly ever mention the recent (months ago) IBS thing that came up. Yeah, my body party was not rocking enough, you know? Heh. And I lost coverage just as that was getting started, so I have an Rx and some advice on life changes and that’s it. Other than what it does to my every fucking day and life in general, it’s actually kind of hard to care about it specifically, at this point, you know?

Seriously, where is the cake?

What is this morning? Lupus flare? Fibro spots giving me daggers today? Tesla coil -esque electric charges up my back? Joints upset over the lingering weather pressure border turning my Human Barometer status into a nightmare? Can I stay more than 15 feet away from the bathroom today? This week? Do I have spatial coordination today? Will I need my cane or my chair if I have to go out? Can I go out if I have to go out? What is the definition of “must” today? How are the headaches? Big today?

What is an adequate day under these standards?

Take up the standard "dress to play even if you know you will be on the bench." Get dressed every day, because not is a tacit acknowledgement that the world spins without you, and even on days you are okay with this fundamental fact, other people expect you to be as not okay with it as they are with the idea regarding themselves.

Fucking hellooooo! Where is the damn cake?

Sharing

I love to write. I love to read. 

These have been true for all of my life that I can recall. When that was taking away from me for a while because of The Incident, I was inconsolable. I was inconsolable about a lot of my losses, but the names of my loved ones and reading and writing were the top of that list. Buttons, shmuttons. I have clawed a lot of that back, and I am both proud and grateful for all the help that my loved ones offered (and offer, they rock).

I really dig blogging. Hell, I have left a LJ path behind me that has at times been huge. I dig reading blogs, looking into you as you do into me.

Every time I pick up blogging again, it is for a reason. And I find as that reason passes or I have done what I can with or about it - I start to write really personal things about living my life.

Those get left in the draft folder and or deleted - although every once in awhile I will share one. And you respond by reading it a lot. Which is great.

It also happens to scare me to death. 

That article on wheelchair etiquette is born of a thousand indignities suffered by me and other people. I try to imagine the folks that visit it, and I think it appeals more to folks in chairs that need a release than maybe it does to the able-bodied. The sharing of those indignities, in my particular way, seems to have helped some some bodies out there. I think I want to do more of that.

I have been hesitant  though, most of the time, to really peal the skin off and show you, J.D. Ballard style, the workings and brokenness underneath.

I think this has to change. I have decided to write. To be. To share. To be more vulnerable. Maybe to YouTube. 

To dare to do enough to risk being wrong. In front of you.

I am not so much inspired as I am tired of the shell I have insisted on living in for my own protection. I am a big girl and I can handle getting hurt. Hell, pain has never really been the deterrent for me that it is for most folks. I am not coming out all Bob Flanagan, but something closer to that than where I am now.

Struggle Days

Lately, I have more struggle days than not. A struggle day is when some symptom, some part of something out of my control makes the day harder than it should be. Sometimes it feels like a victory to see the end of one day and the beginning of another. Now, I do believe that in general, but I rarely actively feel it.

One rabbit hole that has made this last set of struggle days better is the Green Brothers. Crash Course, Vlogbrothers, all of their efforts. They are amazing. I recommend pretty much everything they do as far as I can tell. I knew John Green was on my computer before, and I could not remember why until I saw him talk about being on PotUS's first G+ hangout.

Another was Yo Is This Racist, which you can enjoy here. 

The Buddhism thing is moving along at a pace. What is helpful is that so far there has been nothing I have learned that has contested my own standards of honesty, compassion  and trust - while I do not always meet those as I would like, there they are just the same. The Boyfriend and I went to a weekend local event and it went well. I had a crushing moment of vulnerability and moved through and with it rather than pretending it was not happening, or taking it completely private.

I am trying to live more honestly, which brings up the vulnerability thing again, which I am experiencing quite a lot of lately (even if I need spell check to tell you that!). That means shedding the facade of not being in chronic pain. This is awkward, because good people are made uncomfortable by people in pain - they want to fix it for you, bless 'em. And they just cannot, which makes them feel bad. Now, I do not mean griping about it all the time, I just mean being honest when something hurts a lot, not hiding the signs of pain as they happen, and just going with whatever I can do every day: if it is just to get my ass dressed and sit and be with folks, or head downstairs and do some crafting or minor sewing (I love making actual things that can be held or given.)

So here I am. I hope you have been well.

Stealing Memories

In the middle of a bunch of personal drama, a package arrived for me. The package had a t-shirt for a web site and YouTube series I was supporting until the middle of said personal drama. So I was in a quandary about what to do with said t-shirt. Do I throw it away? Keep it? Give it to one of the kids and get reminded of the drama every time they wear it, but give the money I spend some use? 

Mentioning my quandary created what I should have known, given hindsight, yet more drama. I ended up refusing the offer to refund my money. Here is why: not only did I pay for the shirt, I _earned_ it. I earned it for watching every episode. I earned it promoting episodes. I earned it talking up the show. Least of all, I earned it by buying the damn thing. I was not going to let a damn social mess tell me any different, even as this guy tried to steal my memories.

Before you start to think that "stealing memories" is a bit dramatic itself, let me explain. People have tried to steal my memories before. It has happened to you. A person makes an exit from your life, and in the process tries to invalidate every good memory you have of them on the way out the door. Maybe they claim they were only friends with you to make a social situation easier  Maybe they say that they were only there because you give a fine blow job. They do their damnedest to sully or erase the good times, whatever fellowship you may have shared, the contagious smiles, the talking too long, the shared heartache - all of it they take a hearty piss on before they are gone. Now you know what I am talking about, I think.

I decided a couple years back that I would no longer let people steal my memories. If my brain held onto something pleasant, it was going to stay. This was when a couple we had considered great friends and part of our family was making their exit. On the way out, they were stealing what memories they could, and I just decided to not let them. Sure, they were gone shortly after, but I protected my good memories of them and kept them separate from the bullshit that was happening right then. I would remember the bullshit too, but separately. They could retcon their own lives, but not mine.

Do not let assholes make you forget why you thought of them as decent folk. Do not let people erase your good times. Do not let them take away the rough times you shared.

Do not let people steal your memories.

Oh, and the t-shirt? It is going straight into a keepsakes box, unwashed and unworn.

This Knapsack Here

The other day I was trying to be supportive in a chat room discussion about the issues that many black and brown women regarding feminism in general, particularly first and second wave feminism. It was a great talk and it seemed to me that folks were able to express discontent freely and talk about how intersectional feminism was still not enough of a force to reach them, let alone include them.

I really wanted to talk about how the disabled were right there too, in line for forced sterilization in the beginning. And later. And still now.

I wanted to talk about how bisexual and lesbian and trans and queer women have struggled for recognition in the women's rights moment, too. How we were institutionalize and lobotomized in this country (US). 

I wanted to reach across the room and connect on how poor women are still struggling to get recognized in an era where they are still ignored and pathologized. Where the poor get lost in the shuffle.

It is hard to say that you are supporting someone's right to express themselves without interrupting them. So I stayed quiet, offered reference points as to which wave of feminism could be fairly characterized as doing what (human footnote machine!), and otherwise reading and learning and feeling what other people were writing. They hit a lot of the problems I have with the feminist label, too. Maybe I did the right thing, maybe not - and there is not always someone that will tell you. I did not have one this time, and I do not expect anyone to take on that job, but I appreciate it when someone does.

For all my sympathy, for all my intersectional connections to issues inside of the movement, I have a distinction: I am white. I am a whiter shade of pale. I am Whitey McWhiteson. That whiteness shields me, even with the shield seems pretty pathetic. As a white disabled woman, I am at an advantage over an Asian American disabled woman. As a white bisexual, I am at an advantage over a Hispanic (Latina) American bisexual woman. That is my knapsack, even if it is sometimes pretty useless feeling, it is always in effect.

I would not fault the folks that would never have that conversation in front of a white woman proclaiming feminist tendencies. There are some disability issues that I do not share with the TAB unless they are family and need to know. There are some bi experiences that are pretty exclusively understood by other bi folks. Poverty is a very specific way to try to live, and those that have never struggled with money seen to have a very hard time even understanding the basics, given the rare occasion that they seem to try to understand at all.

I did not feel left out of the conversation. I felt honored to be there. With all of feminism's problems, I was honored to see it, glad to offer what little I could and otherwise bear witness with no let or hindrance. 

(The links are kind of disjointed, and I am unhappy with them and just stopped using most of them. I am just going to leave my thoughts here and let them stand as they are.)