Blog Busy-ness

As I get used to changes here and on other services since I last knew them well enough, there will be lots of blog business & changes. I want to keep you up to date on them, but will save up for posts like this maybe once a week or so when making changes.

Most importantly: this is still a safe space, and a commercial free space. 

You can reach this blog through the blogspot address or by my own url.

In the "For Your Convenience" gadget I have added "Where is PatientC" which may grow a little. 

I have removed the "Team Blackness" page, but folks that need that information can get it by contacting me if desired.

A "Profit" page was added regarding commercial contact.

The Uptweet button appears to be broken so I removed it.

The old Facebook button was broken & so removed.

I reviewed the themes, etc and decided to keep things as they are for now. I like the simple, elegant look - let my ideas stand for themselves.

Yes, I will probably keep up the snapshots with posts thing. I like it, it helps when linking to graphic oriented pages, and keeps you and me both grounded.

The Facebook page is a neglected mess, I know. That will get fixed but I felt flustered by it after everything else and it will have to wait.

If you find issues, and have a free moment, I would appreciate you passing the word along. Thanks!

PatientC Lives!

It may be news to you, but PatientC still lives. Yes, yet another "get blogging again" effort shows fruit, so let us get fruity!

A tuxedo "pit bull" puppy with a content, silver haired PatientC.

In recent times I have been writing again, and thinking of you, Dear Reader. I finally decided that it should be up to you whether or not you expose yourself to my various news, ideas, and brain drippings. I will share what I want to share, and you can read what you want to read. Consent is a great thing!

Some family, some Family, friends, and associates will now read this, so I have to give this caveat: while I appreciate your attention, please understand that I have to write as if you will never see this space. That does not absolve me from hurt feelings, misunderstandings or other results of us meeting here, it just means that we will have to deal with them together, if you want to deal with them at all. 

Life was in a weird place for a while: I am getting around better, sleeping better, loving more demonstrably, being there, and doing some things more. This has a lot to do with the love and support I have at home, with dealing with ailments and problems more clearly, celebrating victories honestly, and with managing the pain that interfered in every aspect of that life.

The past year saw me lose 50 lbs (because I can move again!), be there for my family (they were the ones in and out of the hospital this time, how weird!), get a dog (Nissi!), and commit myself to learning more about Buddhism even if my attendance at meditation practice has been spotty.

I intend to resume a lot of my regular features: Gimpy Gamer, Buddhism, social justice, disability, Things That Make My Life Easier, reviews, sex - most anything I can hold in my head long enough to get it to you. This means updating most of the whole damn blog, so changes ahead!

What Do I Do? What Do I Want?

Recently I have been thinking about my blog here. What do I really want out of my blog, what do I want to put into it, and what on earth do I think I will get out of it? Please note: this is not some sort of blogging goodbye, I am analyzing what I am doing on a number of fronts.

One of the first side effects I noticed when I became (or finally realized I was) disabled was a serious disconnect from the world around me. I had not opted out of participating in the world, but very few things were aimed at including or even caring about me and this new-to-me group I found myself in! Unless I wanted a Jazzy or a Rascal I was pretty much left out. I already experienced this as a woman, as a poor person, as a poly person, and a bisexual (unless you are a bi woman having sex with other "bi" women for the purpose of turning on straight men, being bisexual is often considered indecision or greed rather than an actual sexual orientation). In most of life's genres I am relegated to a background player, or just ignored. I do have relative privilege and I try to live my life with that understanding.

My response to being discarded and feeling disconnected was to become hyper-connected. I went from not caring about most television programming to having the news on almost all the time. I started spending more of my time on line following news, pop culture, and finally connecting my interest in politics and social justice to the modern Internet. I found that if I saw a news story a couple of times I had a much better chance of retaining it and being able to discuss it with someone else.

As the scope of the issues and problems regarding USian society and culture about disability became clearer to me and I started to understand that it was right up there with other great societal poisons, I began to understand that I wanted to be part of the solution. I wanted (and still want) to take some of the things that happened to me along the way and use them to help other people. I want to take the horrible things that happened and give them to you so you can either avoid them yourself or better understand someone else in your life that has experienced similar things. So here I am.

Where Have I Been?

Hallo. It has been a while, but you and this blog have never been far from my mind. Unfortunately, all of my current drafts of pieces to share with you look like trash right now. I have been quite distracted. The kids have needed help. Minion One and I are both dealing with new diagnosis (and the same med for each of us!). Minion Two's birthday was last week! I have been sick (surprise!). It has been busy and disorganized here. Sigh.


This month the Husband and I will celebrate our sixteenth wedding anniversary. Woot! And we have been together twenty. Suck it, everyone that thought (and especially those that said) we would not last!


This year our poly family has been in our current configuration for ten years. More woot!


I almost have the silver hair I have wanted since junior high! After salons told me they could not do it, it could not happen. After a beautician that was a family friend said she could do it but never did. After all that, my bald Boyfriend amalgamated a bunch of instructions and anecdotes. We got the tools and the chemicals, the bleach (although they call it "lightener" now) and the wash. The process was long and hard to sit through. The Boyfriend was nervous. I was anxious. The wash took everywhere but where I needed the "lightener" the most. So one more sitting and I will have all silver hair. Down to my ass silver hair will be mine! Oh, yes, it will be mine...


So it looks like I have IBS (irritable bowel syndrome). I am on a med I have to take before I eat, and other than some diet advice, I am kind of floundering. Thanks to a walking, talking personification of awesome on G+, I feel more capable of dealing with this. So thanks a bunch!


This lupus/fibro thing has been kicking my ass lately. I wasted through part of the winter and then put that weight plus ten pounds back on super quickly.


We are battening down the hatches for the end of the school year. I have put together a earned/pledged privilege system. And I am making plans to do more things with the Minions, rather than let the summer slip by without doing something sometimes. Movies, video games together, working in the yard, napping - I want together time before they are too busy for their 'rents, you know?


Toe shoes - they rock. I lucked into some, and I will be talking about them.


I will be talking about the games that I have played recently, all the political stuff going on and how it may change lives like mine and my family. There is so much going on and I want to share it with you.

Incoming!

So, I decided, Gentle Reader, that I have kept you in the dark too long. And the truth of the matter is sad, indeed: I keep hitting fibro/lupus fogs that have been eating away at my ability to think things through. Instead of waiting for my brain to come back, which I have been doing off and on for months, I am going to say "fuck it" and forge ahead.


But this diminishment has kept me from writing my review of the terrific How To Be Black. It has delayed my playing and review of Leela. Never mind what it has done to my personal life. Arg! I have drafts going about gun culture, about Civil Rights (TM) & civil rights. And I did actually tally up your answers to my question earlier, about what you are interesting in reading - and have started working on some of those subjects! Most of these are actual drafts that I just need to be satisfied with and publish - not pipe dream promises.


Thank you for your understanding and for sticking with me. I am sorry that the mess I am dealing with has the ability to mess up pretty much everything I am involved with or am trying to do.

Ask the Reader: What Do You Want?

I am looking through my old notes and working on some new content for you, Dear Reader. You know I am guessing over here, right? I did not get any SuperCrip abilities when I got sick. I know, right? And while I can read faces, body language and voices and tone - I am not actually psychic.*


What I want to know is this: what do you want? I have never actually asked you, the people I am actually reaching, what you would like to know about me and my situations. So take a moment and write a comment (they are moderated for your sanity and mine, but yours should show up pretty quick) and let me know. 


Here is a list of some of the things on my mind that I am currently scribbling about. Some may even live to see the light of day the Web! You can add to this list with new things, or just say "Hey, I would really like to see #4!" or "I have always wondered about that #2." I am feeling energetic about this blog again, and I want your help to keep that going.

1. Gaming while disabled (and female, and lots of things!)
2. Playing Star Wars: The Old Republic.
3. Wheelchair modification or maybe even building from scratch.
4. Poly families and Newt Gingrich.
5. Engery drink reviews! I really dig energy drinks.
6. Internalized ableism (thank you, Marcus!).
7. Plan B.
8. The a very brief history of abuse by the medical community of the marginalized and how it continues today.
9. Some of my fandoms and how even some of my favorites treat disabled folks, you know, me, very badly.
10. Cripdrag and why it is a bad thing.
11. Occasionally I will ask you for advice or opinions.
12. I want to write about being aviodant. If you know what that is you know that it is a kind of funny contradiction...
13. Parenting while all of this is happening.
14. Considering Buddhism.

* Yes, this means I know when people in front of me lie to me. Every time. I do not always same some thing, and if I cannot prove it to doubters, I may even have to still go along with your lie... for a while. But never, ever doubt: I know. Hell, maybe I could write or do videos about that...

Relaunch!

Hallo! It has been quiet some time, no? Well, the silence coming from my little corner of the Web is done. This is my official relaunch of my blog! While my silence has been due, in part, to laziness; I have also been writing a lot, and thinking even more.


What do I want PatientC to be? I want it to be a tool for making the world a better place - even if it is just a tiny bit, a teaspoon at a time. I want to talk about what is on my mind freely, without fear. I have spent no small amount of time looking at the history of social justice bloggers that have been bullied out of the Internet and talking with my family about the possibility of that sort of thing coming to our door.


I have decided that I will post about whatever is on my mind. So not every post is going to be about disability or related things or maybe even social justice. 

• I may talk about gaming, especially video games. 
• Hell, I have a stack of energy drink reviews - I could justify those as being a defense mechanism against both my internal fatigue and the fatigue produced by a couple of my medications. But I also simply like them, and like trying new ones. 
• When my hands can manage it, I knit, so that may come up. This is an election year, so you can bet that I am going to talk about that. 
• I may post consolidations of the days action items for you to participate in or not as you choose. 
• Other social justice stuff will definitely come up. So you can expect posts on sexism, sexual orientation, race, class/poverty...
• I am studying Buddhism, so expect that to be a subject that comes up with some regularity.

The truth of the matter is that I am a human being, along with being a woman, being disabled, being bisexual, dealing with poverty* issues, or any number of things. So a lot of things come up in my life and in my addled brain, and I may share any of them with you at any time.


If you see a story, issue, or item of some sort, and you think I might be able to write about it in a worthwhile way, let me know.


I will be expanding my efforts to include more regular writing, some videos, and expanding my concept of what I can do and share with you.






*I am a poor person lucky enough to live as a middle class person. It is complicated.

Now Playing at SexGenderBody!

Great news, I have been invited to blog at SexGenderBody.com. You can see my introductory post there, and I invite all of you to take a good gander at the content over there. I am greatly pleased to be among the number of amazing bloggers under the name SexGenderBody.

Most often, I will post here and reblog there, but when I write things more explicitly about sexuality, it may get posted there with an announcement here.

As I see it, you own me no favors – you do me a great service just by reading me, an even further one when you respond via comments or whatnot. It is with this in mind that I ask you to take some of your valuable time to check out SexGenderBody.com – it is well worth it.

Edit: feel free to see my intro here!

On Social Justice Blogging - Jumping in the Pool Head First - Advice

I have thought long and hard about trying to become part of the social justice blogging community. As a reader/lurker over the past handful of years or so, I have watched the public side of some very ugly shit (ableism, racism, fat hatred, identity policing…) going down on various sites. I assume that what went on behind the scenes was much, much worse. I also figure that any community is made up of people, and sometimes people are like that. 

Yet, I still have things to say and a desire to say them – even if they are only ever seen by some family and friends. And you!

I think that it is inadvisable to trust someone just because they share a common interest, even when that interest is supposed to be the “tide that lifts all boats.” So I will make what connections I can based on personal observation rather than assuming that someone with an SJ cause is going to know, understand, or care about what I hold dear. I expect to be treated the same.

I know that I will be distrusted by a lot of folks because I am white, and I get that as much as I can. I am also bisexual, disabled (although I pass occasionally), born and raised lower class (not so much now, but that stays with you in ways that are surprising and disturbing), pervy, nontheistic, and poly. This is not an Oppression Olympics entry; I just want to lay it out there here and now. Where I am privileged I will endeavor to be the best ally I can be and promise to improve at each opportunity.

At home, I have a saying, "The reason we do not argue when I am wrong is because I think before I flap my jaw and when I am wrong I apologize and shut the hell up!"

What is your advice for speaking your piece with strength, compassion, and integrity while weathering whatever storm may blow?

I may be late getting to comments today. I have a physical issue that is kicking my metaphorical ass and I am going to go look at a car today. Cross your tentacles if you care to do so - I could really use a car! This is the reason for the super early post and my anticipated absence.

Here is a sneak peak at what I have cooking for you, Dear Reader: a vitriolic crip rant I wrote one lonely night, a review of a product called Pill Glide, some thoughts on blogging while avoidant, some more Things That Make My Life Easier (with something catchier to call it, perhaps!), my experiences with Moore and Me, some neato links, and a small series of articles detailing my politics and why I think they are the correct choices for me.

On Trigger Warnings

Trigger warning: the explicit statement that a piece is about to discuss topics that some may find difficult or disturbing. For example, a blog post about Roman Polanski’s crimes may read “Trigger Warning: Underage Rape.” Their use (or lack thereof) on the web is sometimes highly debated. A great definition of trigger warnings and an advocacy of their use is here. You should be reading Shakesville, if you are not already.

On one hand, I think trigger warnings are great. It is a good way to avoid inadvertently sending someone shivering into a corner because you have mentioned something that they actually experienced and still haunts them (or any version of that scenario). This should be a default part of trying to be a decent human being, no? I do not want to be the asshole that does that to someone, do you? A lot of sites I read and respect use them, and a lot of readers appreciate them.

On the other hand, the little writing snob that I apparently have in my head says, “Well, if you write like you are supposed to, with a summary at the top and all, then that is the trigger warning!” This, of course, makes me feel like a crappy writer if I use them. Yes, even when you take into consideration that blog posts are far more conversational than formal. Please do not mistake me; I am not in a position to deride anyone’s writing style. That voice derides my writing constantly, as you can probably tell. Most sites that use trigger warnings, given the beginning of this paragraph, do not need the addition of the words “trigger warning” as they let you know what they are talking about right away, anyhow.

This also makes us de facto gatekeepers of each others’ mental health, in an amorphous way. We are our sisters & brothers keepers to an extent. But how are we to know what is a trigger for each reader? Hell, do you know all of your own? Are you sure? This article talks about it very intelligently, and I highly respect the folks that write at flip flopping joy.

If you were abused and that abuse was facilitated by putting a blue pillowcase over your head, am I a monster when I offer my hospitality and the guest sheets are blue? No. I am a monster if when you stand at the door shivering I do not offer my arm, lead you away, and change the damn sheets. But I cannot do that unless I know to do so, and I cannot pretend to know what may set you, the reader, into that particular hell called being triggered.

So, in essence, I will be giving trigger warnings (because it is the correct thing to do), but usually not using that exact label (because of the snob in my head). I do promise to do my best (which varies on any given day more than it does for most folks - thanks, lupus/SLE) each day to write well, and let you know up at the top if there is problematic content. You are welcome to call me out, if you wish, when I fail. This should both meet the needs of people that need to concern themselves with being triggered, and placate the snob in my head.

Safe Space

I have read a lot on the web over the past mumble years. (No kidding, since before it was all connected, e-mail address could be lines long and have things like BANG in them, and pretty much consisted of us writing on clay tablets, smashing them into a fine powder, and sifting them into phone lines for transmit. Maybe I am teasing about the tablet thing.) In the past couple of years, I have gotten involved in educating myself on a subject I had always held dear, but mostly felt I would be alone in: social justice.

One of the things I have learned is the importance of a safe space policy. This allows the disenfranchised to give air to their voice without reprisal from the usual subjects. You will not be told your tone about feminism is too strident here. You will not be told to apologize to the jack hole that stepped on your toes here.

When I first told my friends about Patient C, one very smart one asked me about my commenting policy and why I had it. I responded that the conversations are better on the sites I read that have such a policy. I have seen the tales of threats of rape, death threats, and various evils out there, and I will not allow them here.

Now, on the other hand, some folks view the entire web as their very own First Amendment playground and like no fetters placed upon it. If this is you, you will not be happy here. So take my fond farewells with no bitterness, and may you find what you seek elsewhere. Right up at the top of this page, on the toolbar, you can start your own blog for free and set whatever commenting policy you like. You do not have to put up with mine.

This? This is my little corner of the Internet, and inside the bounds set by my host, what I say, goes. If you post bullshit, I may not publish it at all. I may publish it to correct, ridicule, or maybe even correct and belittle you depending on my mood.

I intend to amplify certain voices over others. I intend to speak to my own experiences, point you towards the experiences of others that may be edifying, and share information in a way that, if not equal, then lifts up the voices that are rarely heard.

On this, and a many other things, am sure I have screwed up regarding the privilege I do have. This will undoubtedly continue, as I try my best to my efforts as mistake-free as possible. It is okay to point it out when I do. I cannot learn and grow if I do not know when I fuck up. I do not expect those with disadvantages different than my own to instruct me, but I would appreciate the occasional helping hand. So if you have the spoons and the inclination, I will do all I can to accept that criticism with grace, learning, and as much of a lack of ego as I can muster.

(Edited - that last paragraph had a ton of grammatical errors!)

Wow, Folks!

Well, people, I want to thank you for getting the word out on my wheelchair etiquette piece. The response was amazing! (Also, a little scary, but I am avoidant, and we can talk about that some other time.) I am very gratified by the traffic, and by your comments, I do not know what to do or say other than to thank you.

So, thank you.

I have been alternately busy, sick, or both busy and sick lately. Okay, and a little bit of Halo: Reach in there too. Blame SLE/lupus, the Democratic party, my birthday (woot!), maybe Bungie, and definitely me. I have a bunch of stuff in the works for Patient C, but I have some juggling of priorities to do, too. Yes, a round of sighs all around. 

I promise I have some good stuff going, but some of it it is also tough -- recounting atrocious stories in order to get to the meat of various matters takes more courage than I can sometimes muster all at once.

Watch This Space!

Heya! This is just an update post to let you know I have been back in town for a couple of days, and things are okay. I am still really fatigued, but I expected and planned for that, no worries there.

Here is a taste of the next several upcoming posts:

• I Have Politics, Get to Know Them (Me),
• The SmartAss Guide to Puking for Pros,
• An Awkward Moments post, and
• The SmartAss Guide to Wheelchair Etiquette (in which I am decidedly not a good cripple!).

And since you have been nice enough to come here and read a maintenance post, I will treat you to even more of my crip-brilliant ideas:

• Thoughts on House, MD and responsible portrayal of opiate use,
• Hospital Visits, and why people should damn-well go,
• Advanced Directives,
• More Awkward Moments,
• Disability and Sexuality,
• Caregiver Stress and ideas of what to do about it,
• My story (yeah, this one may take a while),
• Emergency Bag -- why you should have one, what should be in it, and
• The Office Visit and the Social Contract (and why you should break it!)

So, there's a little peak into my brain and my notes. Thanks for stopping by, and watch this space!

A Few Days Away, Suggestions

Hello, thanks for stopping by!

I wanted to let you know that I am going out of town for a few days, to visit a friend that is out-of-state, in the hospital and is going to have surgery. She is a great gal, a terrific friend, and I have high hopes for this procedure. I will leave tomorrow, be back this weekend, and should have a new post up before the weekend is over.

I have a few posts half written, but I do not think I will get to them until I get back. My next piece may very well be on ER/hospital etiquette.

I have not taken a solo road trip since I have been sick, so this will be an adventure on a number of levels. I may write that up, as there are singular concerns for the disabled/chronically ill while traveling. 


So while I am gone, I ask you to take a moment, think about what you would like to see me address here, and post a comment about it!

Update

I know things have been quiet here for about a week or so, and I want you to rest assured that I have not forgotten Patient C! Here are some things I am currently doing for the blog:

• Scouring the web for resources on dis/ableism, feminism, ageism, homophobia, transphobia, and other social justice interests, with a focus on intersection, 
• Coming up with a good method of archiving this blog, so in case of server disaster all is not lost,
• Working on a post about pain -- I think it may end up as several posts on things like the pain scale, the USian attitudes about pain and pain management, etc... and
• Making a list of what needs to be in a medical information binder.

I have another handful of ideas that are not developed enough (yet) to list.

Thank you for stopping by! Please keep doing so, or look for me to announce the next update via Facebook, Twitter, and GoogleBuzz. 

Apologies

It has just been brought to my attention that some web browser ad-blocking software will block my "Search This Blog" and Google News feed. I am not quite sure what to do to remedy that, but I extend my apologies.

Advice on this issue would be appreciated.