Yikes!

Well, hello there, stranger! Here we are again, me thinking I may be able to hold a thought long enough to write about it and you here to read it. Heavens help you.

Adorable black "pit bull" gazes longingly over a cushion over the back of a couch.

This election cycle I signed up to help local Democrats, and they seemed to be okay with my position of being a liberal that settles for Democrats, especially in Indiana. 

I saw Janelle Monae's Dirty Computer and it was amazing.

While many things have changed, many have not. 

I had spinal shots again, they do not last as long as we hoped. But they do help, so we will keep at it as long as that is true. I still do my PT exercises when my SI joint dysfunction acts up and that still works, but again, not as well as it used to work.

The Minions flew the coup but the Menfolk remain.  I have some things to get off my copious chest there.

I am learning to draw! For real! I can put marks on paper that resemble objects to other folks. 

My Nissi is big and healthy and willful. I am so happy with her and so proud of her. Look forward to lots of photos!

I have a computer to get used to, so many mistakes will be made. We can hit those things as they arise.

The current PotUS is the worst in my meager lifetime. There is much to say there.

I have found a lot of shortcuts to share that make it easier to live this life. I will share those: from talking about disability to friends and family to nail polish tricks.

I have some older post drafts that are, unfortunately, still relevant.

No promises, but I intend to be back for good. Now I will get to writing and hopefully produce something I can share with you on the regular.

Little chi-wow-wow mix starts to wake up in his round leopard print bed.

One of the dogs broke my face today. Not the big one, but the little one right above this paragraph. Some one was at the door so I leaned forward to get up off the couch just as he was launching himself from the end it and we collided in a manner most unpleasant. I grabbed my chin and put it back before I finished realizing that he may have actually dislocated my jaw. While there is swelling, I can talk and eat. Casual contact with healthcare providers advised that I take analgesics, ice and rest. I am doing just that, but if it is still swollen or the pain has not subsidized I will bug my doc about it tomorrow.

So start watching this space again, Dear Reader.  I am going to start writing for me but sharing it with you - which will be quite different than before where I was trying to write for you without knowing who you might be or what you might think. 

At least you  know you will see sex talk and cute dog pictures! 

No More Excuses

In the midst of all the heartache, here I am believing I have no more excuses to ignore my few, precious Dear Readers. So here I am in the midst of a post-truth, post-Trump mindset. Here are the things I am working to accomplish:

Nissi at rest. She is maybe 6 months old here, black with tuxedo like white markings. Here she is napping on the corner of a grey couch. 

• Training the puppy is going well. She is so much smarter than I thought, so it is much more like having a toddler in the house than usual.
• My head hurts. 
• My teeth need attention. Professional attention. I am working on it, appointment after appointment - now I have to see a hygienist four times a year to try to save what I have left. I am starting to sometimes actually look forward to being rid of them some day. 
• I need to write more. A lot more. These brain droppings are cluttering up the works and so I exorcise them with you.
• My gaming will never be better than the upper echelon of mediocre, and it is only very rarely even that good.
• Learning Spanish is slowed to a stop, but I have not given up. Thanks, Duolingo.
• I have the fortune to discuss the nature of reality with the author of Quantum Sorcery - have you read that yet? I learn, aid, and keep the candles stocked - apprenticeship!
• I can now draw a sad coffee cup that other people can recognize and say "nice" without appearing to bullshit me. That is kind of cool, will keep working on it.
• My cleaning projects had unexpected progress, which is great. Our black carpets frequently get vacuumed before they turn grey from pet fur.
• Woot! My craft room is accessible and useful again. It does need some work. It will always need some work. D valiantly offered to get a new sewing machine if I got the room right again - I will be talking about that soon.
• I gathered all the stuff to start learning recorder, but there are too many people home all day for me to feel comfortable going back to fourth grade right now. I can read music and I played clarinet for a decade, this so not be super difficult. But thanks to my teeth (see above) I cannot play clarinet without killing my head, so recorder it is. Well, it will be once I have some private time on the regular again.

My Buddhism may be causing this existential crisis. I have not the resources to take any great practical leap: week or month long retreat. Hell, I can barely afford a new read. But I feel like I am on the burning edge of something... I am not sure if there is much difference between a leap and a fall - besides the landing.

Sometimes I feel something... precious. Dust mites in the sun glinting like diamonds, special in their transience, their worthlessness. Connection to the suffering of others, an empathy uncontrolled in reach and depth, dangerous without the rest. 

A frustration with the things I own owning me, but raised too poor to give away all that I should, let alone minimizing as I sometimes want. Once a poor person has a thing, unless we must leave it behind it is very difficult to give things up. 

An unnamable desperation to stop feeling so fucking desperate. A coming together that keeps falling apart. 

I hope you are getting by, Dear Reader. Find comfort where you can. We are regulated to the fringe again: Outlaws that have done nothing truly wrong. 

How to Restart a Blog

I do not do resolutions, but I do try to reevaluate my goals and recommit myself to those goals. You, Dear Reader, have been on my mind a lot more than I have shown during my hiatus. So, what happenings have happened or are happening?

I just celebrated my first year of no smoking after switching to eCigs. My nicotine intake is less than half of what it was when I started. I was using 36mg juices at the start, and vaping them like there would be no tomorrow. Now I use 18mg to 12mg and actually put them down once in a while. I am currently using a VTR, an Eleaf iStick and an SVD 2.0.

(My spell check is having fits with the above, my apologies for any actual missed typos!)

The family is doing well, despite the challenges in their individual lives. Minion One has technically become an adult, although she is still a high school student. Minion Two has found her groove, I think, and is shining brightly. The menfolk are getting along with life although they too face some challenges.

My Buddhist studies are going well and I am committed to them. Wrestling with my avoidance has been the biggest challenge, as one of the three main components is community (sangha).  

My health has maintained, although it has included a new problem: antiphospolipid syndrome. This has not increased my overall disability, although it is more meds and much more worry. 

I am closer to my idea of a healthy weight after getting better pain management. I had to finally tell my doc, "I am gaining weight because I am not moving and feeling gross and indulging in food, one of the few pleasures I can enjoy just like everyone else. I think if I hurt less I will move more and eat less." That all proved to be true, and although the profession is still moving more towards criminalizing seeking pain treatment, she listened and I started moving more and shedding unneeded and unwanted pounds.

So let me put this out to you before I change my mind.

This Post May Be Crap

This post may be crap. Every post here may be crap. Maybe every once in a while I get to be the millionth monkey and write something not crap. But I know this for sure: every single thing I decide to not write is definitely crap. So, I am going to side-swipe the little hater, the self censor, and work on the assumption that crap happens, that crap happens to me, and it is better to get it out and get one post closer to something good. Right now I am in flare management mode, so what the hell!

PatientC, a middle aged white women with silver/blond hair taking a rare bathroom selfie before a feared massive hair loss that did not occur.

Right after killing sprees and mass shootings may be the hot iron for gun control and gun abolition activists but it is the worst time to try to convince someone that they should give up what they see as their personal defense against such things. These folks sometimes lack the ability to use basic empathy as much as the NRA does (almost all the time). I use the phrase gun abolitionists to simply indicate activists with the goal of eliminating civilian gun ownership, no baggage. I think that control activists would do well to separate themselves from the abolitionists folks if they want to get more done. My heart aches for these folks, today in Oklahoma and who knows where tomorrow - so I want something right, something real, that will help. There is a lot we can do to make the 2nd Amendment a secure right that also respects the rights of others to live without them. But the secessionists, the militia/"states rights" folks, the NRA, the gun abolitionists - they are all going to have to sit at the kiddie table of ideas until they show they can do better.

The Fault in Our Stars is a great movie, you should go see it. You should read the book too. I got into some hot water trying to address the crip face/crip drag issue - but as I said then, if that was all I noticed I would never get to like anything. It is daring to put crippled and dying folks out there, to treat those stories as even worth the telling. Particularly telling tales with disabled/dying kids - we like to pretend they do not even exist. Also please note that Indianapolis is not as white or straight as the movie makers seem to think it is. Overall it is really good and worth the time and almost as brave as the book.

I am over 100 days cigarette free, thanks to vaping eCigs. Which is good, because they found antiphospholipid syndrome and have added that to my list of crap I fight every day. I am glad they found it, it can cause blood clots and kill people, so I would definitely rather know. There is just kind of a shell shocked reaction now a days that comes with new bad news.

(I am trying an app called If That Then This, please pardon duplicate announcements while I get used to it. It could be really useful!)

In Case You Noticed

If you have time to fit it into your reading schedule, I suggest this from American Prospect. It is spot on, and can help explain why I talk about certain things the way I do.

I talk about acquiring things, or things brought into my life, but I rarely discuss buying things. One, I rarely actually buy things myself, and I am a sucker for accuracy. I am involved in more purchases than I make myself. It is hard for me to get out, so I am not the retail hound my mall rat early years would warrant.

Two, we live in a surveillance state. I am disabled and poor, so I participate in programs that have made headlines the past couple of years for spotting "fraud" in their programs by monitoring the online lives of folks forced to depend on them. I worry about mentioning that I felt good enough one day to go to a park, for fear that someone will decide that I am jerking the system for fun and profit. 

Since the beginning of the Earned Income Credit, while the rich bitch about their taxes, the working poor have a minor holiday. Bills get paid, folks  that usually use SNAP/EBT can eat a little better for a while, kids get new shoes... the bleeding edge grows a bit of a scab for a while. And you know how it works, the very rich hit the cable channels bitching that the poor are not suffering quite enough. It is so tiring. 

So when I say I was involved in a purchase, you may have to read into that a bit. Or when I say a new thing came into the house, a new thing came into the house, one way or another. But I do not lie to the institutions that help me and mine get by (barely), and I do not lie to you. I simply require a little more reading comprehension. Well, a little bit more than my obtuse way of discussing things needs anyway.

Oh, and not using contractions - that is just me.

Bright New Year 2014

PatientC, winter style. 

Ready to start the New Year? Well, the first month of it is almost half over already! What are you going to do with it? That is what I am asking myself, and taking stock of where my ambitions took me last year.

The smoking cessation quest is at an end. I have one or two clove cigarellos (cigarettes) a day, thanks to vaping, eCigs, lots of support, and a lot of willpower. 

This blog turned four, I think. I did better than the previous years regarding getting posts up for your reading pleasure. But I am nowhere near where I want to be. I want to post at least twice a week, that is my goal again for this year. I wrote about a lot of things, and while I think it is important to show that disability is just a way of living and not life itself, I do want to get back to some basics on that front.

I finally invited Buddhism into my life in a more serious way, and that is probably one of the most wise decisions I made this past year. It feels like a natural, right direction for me. The Boyfriend and I attend regular meditation! It is the perfect event for the avoidant girl: get together with folks to sit and be quiet and well, meditate. That makes me giggle, but I am also socializing and learning. I am going to continue to travel down this path this new year.

Weight was a bother. I started the year wasting, so I spent a big part of it eating what I could, when I could, and the more filling the better. When I stopped wasting I put on more weight than I wanted. I am battling social pressures about weight and expectations about weight and disability. I need a solid weight/fitness level that will help see me though not just regular life, but my myriad illnesses/conditions/etc... With better pain management I can move about more, so I have hope that with effort I will be better able to not just manage but own my own form.

I have become a better advocate for myself when dealing with the healthcare community, but I still need some work here. It is so much easier to stand firm for my Minions (daughters) or the Husband than it is for me, and that is problematic.

Speaking of the Minions, things have been hit and miss there. One Minion is doing so much better in school, but the other is having difficulty just getting out the door to attend class. They both need help, and I feel I am just not getting them what they need. Our relationships are shifting to interacting with them as actual folks while also maintaining child/parent relations - it is confusing and frustrating when it is not exciting.

I will talk about all this and more in the upcoming year. I plan on seeing you more often, Gentle Reader!

Dear Madiba

Dear Madiba,

You did not know me, Nelson Mandela, but I knew you. In the small white Indiana town I grew up in, there was little talk of racial equality. My mother spoke of it, and brought books and movies into our tiny home that supported such causes. Even with everything that happened to us and between us, that is one of the few things for which I thank her.

But I remember you. South Africa's campaign for equality somehow made it into my life, and my heart wrapped itself around you and your cause in a way I had never felt before. I was a young teen, and I had just been introduced to the Civil Rights Movement of the 1960's here. What was going on in South Africa to blacks and allies chilled my young bones. But there you were, resilient, an advocate for peaceful resistance after using violence. 

You lived! Although you were jailed when I first heard your name, you were alive! Here in the US, our most successful advocates for equality and peace were laid low by the tyranny of white supremacy - it's lackeys using death as their political tool. Violence, prison, slavery, TB: none of it had taken your life or your principles.

In four short years you went from 46664 to Mr. President, ushering in not just a new country, but a new era. You and your movement showed us that peace could be made under any circumstances. It took incredible fortitude and forgiveness, but equality and peace could be born in the shadow of an apartheid nation. You did not do it alone, to be sure, but your strength and serenity were the midwife for this incredible birth.

Even in all your greatness, and your Presidency, and your Nobel Peace Prize, there was more. You remained human, even as we tried to deify you. 

Your quest for peace and justice reached far beyond South Africa. Even in a town that had only recently stopped allowing Klan rallies at the courthouse, your presence reached even there and touched kids like me. For that I could never give adequate thanks, but I do thank you. You and your country was the first cause for many advocates and activists. You lit our hearts and moved our hands and for many of us, even as our causes changed, never stopped.

Thank you, Madiba, may you know whatever peace you dreamed would be waiting for you.

Peace and love,

PatientC

My Life, Bottled

Do you keep flowers from special occasions? I do: funerals, weddings, Mother's Day, birthdays - if someone gives me  flowers, I keep them! I know flowers are kind of frivolous gifts, but I really like having fresh life and color at my desk or table. 

I counter the fleeting nature of cut flowers by drying them and keeping the flower petals. I kept them in pretty gauze bags. I have used some for sachets for the Minions. 

I started running out of places to keep these dry flower petals.

I collect little glass bottles. The kinds you see in craft stores, or in front of windows at restaurants. I think the are pretty. I have some that are colored cut class, some that are clear. I have skinny and fat ones, tall and short, simple and shaped.

Eventually I started  keeping the petals in my glass jars. recently I realized I was kind of canning or jarring my life. The bottles hold flowers from my grandmother's funeral last month, from get well flowers from hospital stays, from some sultry Valentine's days...

I thought that it was neat, and wanted to share it with you. I have more meaty posts in the works, but once in a while I like to post something light and fun.

I think I will give them to my Minions, Menfolk, and my friends when I die. Maybe mix them with my ashes if I get cremated. Maybe scent them my favorite perfumes or leave it to my family to scent bags/bottles of me with their favorite scent of mine... Oh, I could go to Demeter and get library book or leather or whatever folks associate with me... 

My life, in bottles:

Shelf of bottles filled with flower petals, two empty ones up front shaped like a male and a female torso.

A photo from further back, showing the book shelves filled with latest books, knick knacks, and on top - the life bottles.

Keeping On

As I am working on some new content, I wanted to let you know, Gentle Reader, what is going on in this crip(pled) life. 

The eCig smoking reduction/cessation thing is going well. I am down to 12 cloves or less a day, from an initial 30-36 at my peak smoking. This weekend we took a road trip, which usually means a huge amount of smoking on my part, and I only smoked about 8 cigs! I am feeling good about it in general, even though some days are really frustrating.

The Minions (my daughters) are back in school. Hurrah! They are old enough that we can see their adulthood rapidly approaching. I feel like we have not done nearly enough to prepare them for life on their own. 

I am unhappy with my weight and am doing what I can to get that back under control. Well, what is under my control. Last year I wasted to an alarming weight and this year I have done the opposite.

Studying Shambhala Buddhism is a deep learning experience. I have found that I give much more room for learning, for forgiveness, kindness, and gentleness to others than I have for myself over the course of my lifetime. I am facing what disability means to me personally and socially as it interacts with meditation and sometimes causes me to not participate as I would wish. Every time I feel myself close to living in the moment, I feel as if I am putting down an impossible burden of my own design. The one retreat we attended leaves me wanting to attend more but unfortunately there is no longer a regular sitting held in my city. 

One Less Invisible Oppression

Take a good look at me:

There, that was not so bad. Pictured is head and shoulders shot of a nearly forty, blond, pale white woman with glasses and a mildly challenging expression right after a free makeover.

The last thing you probably see is oppression. You do not see illness. You do not see disabilities. You cannot see bisexuality. You will never see poverty, if I can help it. Me and mine will only show you polyamory when we choose. You cannot see non-Christian in a "Christian" nation. You think you see a woman, but only because I present a woman to you, but you really have no idea. You never really do with anyone - get used to the idea.

Now that the celebrations are mostly over, we can finally start to really understand what happened with DOMA and Prop.8, what the rulings mean now and to start to understand what they may mean for the future. My favorite part was watching the homophobes start to sound off in front of news cameras and watch the cameras turn away from them to the successful DOMA and Prop.8 teams as they walked down those famous stairs and raise their hands high.

As far as I understand it, the Court "punted" on Prop 8, a term usually used when they make a ruling that appears to be noncommittal  But the verdict that the claimants (random straight homophobes that picked up the case when the state of California washed their hands of it) could not claim injury to pursue the case. I think that verdict is anything but neutral, finally saying that straight people cannot claim injury when gay people get married.

I think this punt matters quite a lot. As much as the much more decisive verdict striking down DOMA. The dominoes are starting to fall, and with gay families on military bases inside of bigoted states, and gay families moving from states that honor their citizenship to states that do not... It is only a matter of time. That time feels like forever when it is your family waiting it out, I am sure.

Now the religious fundamentalists are using families like mine, poly families, as the next spooky threat to marriage. Although they have not given one indication as to why it would be bad for the State. It would definitely be a Biblically supported arrangement if I married both the Menfolk if our genders were reversed, but that was never really the point. 

At least in California, and according to the federal government, there is one less invisible second-class citizenship status. 

Note: I am as much a lawyer as a doctor, which is not at all.

If Self Improvement is Masterbation...

I have not written much about me personally lately. I shy away from that sort of thing when I am stressed. So here is what is going on with me and mine for the folks that are interested. All of this is happening with tons of help from the family, particularly the Menfolk. I would still be splashing in a miasma of good intent, stalled efforts, and drama without their support.

Umbra does not care if this post gets finished.

So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one. 

"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!

My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things. 

For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.

I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope. 

We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.

We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.

I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.

So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!

SSI: Not Enough for Rent

I already had an article ready for today, and then this showed up in my Inbox:

Study Finds Average Rent Cost Higher Than Entire Monthly SSI Payment of Many with Disabilities via Disability.Gov.

So guess what I want to talk about! You got it...
Please feel free to take a moment to recover from the shock that SSI payments are just not enough to live on. Are you okay? Want a drink? A towel? A fainting couch?

There was recently a cost of living increase, by the way. Heh.

Besides finding some clever ways to say “fucking duh,” I really do not have anything to add to the facts of the matter. Well, I will say that it does parallel my lived experience.


It is difficult to complain when I feel damn lucky just to have the system to work at all for me.

Politics matter: you need to remember this when you hear that the Administration has put SSI back on the table as a gambling chip. You need to remember this instead of calling the people against it “emo progs.” You need to remember this when you visit your relatives trying to live a life on money that is not even rent. You need to remember this when the language of “makers and takers” gets louder again (and it will).

You need to remember that we are part of the 47%. We did not want to be here. We did not get here on our own. We did not decide to injure or sicken ourselves so much so that we could get a check that would not even cover basics.

This leaves us no room to do or be anything other than disabled.

Remember us.

GimpyGamer: XBoxOne and Motion Wut?

Yesterday (5/21/13) I sat my complicated self down in front of the XBox One console reveal. I am a video gamer. I am also a mom, a wife, a girlfriend, a gimp, a member of the LGBT/QUILTBAG community, a mom of someone in the QUILTBAG community, a liberal (if we must), a franchise wide Halo fan, a person at the beginning of the middle of ages, I contain multitudes but let us get to the geek!

I liked a lot of what I saw, and I gave them room to save most of the sweet game reveals for E3. There is an industry show for that coming up soon, okay. It looks like Microsoft is really taking the dive to make the XBox One the ONE CONSOLE TO RULE THEM ALL. Not the other consoles, I mean, but to RULE YOUR LIVING/FAMILY ROOM!

And it wants to get your ass moving.

Here is the thing: gaming is a great pastime for some folks with disabilities. In particular, it allows for a time of virtual/physical competition that people with mobility issues really cannot get anywhere but with video games. When a game is really engaging, really immersive, you tend to equate the physicality of your avatar/silent protagonist/franchise space marine/sprite with your own. Just watch a handful of gamers sit together and play and watch their body language, not just before and after but during play

The reveal, and the industry in general, has me worried that as we progress along the motion control future, people like me are going to get left out in the cold. It is hard enough some days just to hold a controller, why must everything be swiped and pinched and snapped in big gestures? In a big way, this is what I got into gaming to avoid. I appreciate motion sensing in general - it lets my decrepit self work with a yoga section of a fitness game and a meditation game pretty well.

I want to shoot for the big snark target and say that if gamers wanted to be physical, they would go play goddamn sports outside! But that is not, and has never been true. Exercise and adventure games are great for kids in neighborhoods where maybe their parks are not as safe as they should be, exercise games let a lot of us that would feel awkward for a whole host of reasons in a gym participate in guided exercise, and sometimes it is just good in general to get off the couch, if you can.

The mandatory motions in tablet and phone games, the movement wands and cameras with consoles, the mandatory twitch skills raiding now requires - they could all start freezing out this small contingent of geeks to which I belong: gimpy gamers. Just keep us in mind, gaming industry. Sometimes it is hard enough to work a keyboard or a controller or a wand. Let us continue to play, too. Thanks.

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.

Mixed Week

I am glad to see the end of this week. I am happy that you and I have seen more of each other than usual. I was very happy to be on The Black Guy Who Tips. I have some cool new makeup. My hair is a silver white that I really, really like. I have semi-rimless glasses for the first time, and they have my first progressive lenses for the bifocals I will probably wear the rest of my days. I can see well, for the first time in a minute.

It was not all good. Shannon Larratt died. I am having some difficulty writing about him right now. A couple of folks were unhappy about choices I made. A few were loud and mean about it. The money situation is looking bleak. We have to mess with health coverage again - although I am hoping this will be one of the last times the family will get screwed over in this particular way thanks to the Affordable Care Act.

Whenever a friend leaves, it is painful. Unless you were not committed, when one prunes itself, it hurts. You bleed. I was reserved to just let it happen by the time it reached self-parody. Seriously, the engagement had reached a point at which I was accused of martyring myself for telling my own story. This was aside the fact that when you tell a story of a wrong done to you, you tell a story of a wrong done to you. I threw up my hands. What do you even do with that? The very act of expression on my part was delegitimized. Of course your decisions are correct in your own narrative: otherwise why would you have made them the way you did? The conflict had turned around and started eating itself. 

I told you a tale of being triggered. I am still working on that, and I know I will be for quite some time. By being present, though, by experiencing it real and raw, rather than needing to suppress it or deny it - I feel okay. 

I hope you feel okay, too.

Trigger

This post is not about triggers. This post is not about trigger warnings, although I will talk about them.This is about one trigger. My trigger. My hidden trigger that got pulled yesterday.

I am using terms without much 101 today - I need to get this out now or lose it.

Trigger warnings are good in visual and audio media, I support their use. In written media, I find the genesis of them in lazy writing. If you, as a writer, hit even three of your Ws (I count six: who, what, when, where, why, WTF?) the reader should be able to tell if the piece is safe for them. Now they have become de rigor for most folks of conscious out here in the wilds, including me, but I do stand my original opinion.

I had grown, developed, been imbued with by circumstance, a trigger. Sexual assault touched our family recently and has caused rifts and deep harm. I had not done the usual self analysis that would have let me know I had a trouble button waiting to be pushed. I had been busy, you know, living this out and doing what I could for my family.

There is no shame in having a trigger. Life is life, and sometimes life is just fucking hard. It leaves it's marks, and sometimes when coping we develop these fetid warts of damage. With good self-maintenance, some folks can reduce or remove those warts. Not everyone can, or should be expected to, and the advancement of trigger warnings in media is a boon to the folks that are dealing with triggers at any stage. (I have noticed that they have a great side effect: teaching those new to the ideas of triggers what the whole thing is about when they hear "trigger warning" from a trusted source.)

In a discussion of rape culture on a podcast, I was participating in the chat room and my trigger got pulled. I started typing one phrase repeatedly, and until some called it a trigger I had no idea I was doing it. #ShoutOutToTheChatroom, there were wonderful about the whole thing, never ridiculing and being exactly the sort of folks you need in that situation. Thank you, Chat Room. The show runners were great, checking to see if they had done something to provoke it. They had not, and I thank them for asking. If I did not see it coming, I do not know how anyone without a knowledge of what me and mine were going through lately, could have seen it coming.

So, if life is hard, remember to check yourself for untended damage. Get help if you need or want it. Do not be ashamed.

Have You Seen Me Lately?

Yes, I am trying to be back here more often. This is a quick note to let you I had a good time hanging out with Rodimus Prime and SayDatAgain on their show, The Black Guy Who Tips. We talked about me and disability, about being pervy and poly - it was one of the better conversations I have enjoyed lately.

You can, and should go see it here: Spreecast, iTunes. You are missing out if you do not!

I was really happy with how Rod and Karen interviewed, they have a good touch on the ebb and flow of a conversation - a lot people really struggle with that, but not these folks. They talked about the topics with curiosity, some study (wow, rare, thanks, hurrah!), and an overall respect that made me feel really comfortable for the hour we talked! I hope that they feel I respected their home turf and treated it well.

Again, I apologize for not being able to hang out after, I had to get some sleep (I had not before the show, Rod knows what I am talking about!). I listened later and it was all fun!

(I tested these links, but my cache may keep me from seeing some errors. Let me know if you have any issues!)