Tuesday, November 19, 2013

Things that Make My Life Easier, Part Five

Here is a short list of pro-gimp stuff that has helped me out lately. All of it purchased by me, as I have promised I will always tell you if I have a stake in a thing I recommend. Sometimes I do this with single items, but here I am starting to gather small items of interest too. I know I am asking for trouble by labeling this with a number, but I am feeling optimistic!

Shop Tibet: this is an amazing store in Broad Ripple, Indianapolis. They do not have a web page as far as I can tell. This is a shame because they are a great store, with tons of stuff made by Tibetans, supporting Free Tibet efforts. There are plenty of things to find there, including a small but solid selection of books, prayer shawls (I love mine!), dharma items, jewelry... wonderful stuff all in one spot. And I did not punch the fellow patron that asked, "Does Tibet have winter?" but I did offer my sympathy to the lady that fielded the question.

Genie Bras: all the support of a sports bra, with the ability to wear it like a regular bra. No wires. I am not a big believer in "As Seen on TV" although the products fascinate me for some reason. This one is a solid, practical, and comfortable. Note: you do have to put them on over the head, so beware if that is a difficulty for you. The Minions and I got ours at CVS for about $20 for a pack of two, one black and one ecru-ish. They are great no nonsense bras. Note for wearing: they do not really offer much of a cleavage/decolletage view so think about your wishes in that department before you take it out of the drawer. 

Dream Water: this is a sleep aid in the form of a zero calorie drinking shot. They make a lot of claims, but all I know is that it worked. It was not as hard hitting as a prescription sleep aid, and I woke up feeling rested and alert. I did not remember my dreams any better, but maybe that comes with time or is a pipe dream itself. Make sure you have time for a good sleep, 7-8 hours, if you want to use it.

Monday, November 18, 2013

E-cig/Vaping Slang, Part One

If you follow me on various Internet over-sharing sites (micro/blogging places), then you know I am actively switching over from smoking Djarum Special Cigarellos to e-Cigarettes and mods. It is working, and although I have not completely made the switch, I am already seeing benefits and continue to pursue a complete switch over. The vaping scene can get quite confusing to folks new to it, because the scene already has a large vocabulary of slang and code. I want to help with that. 

Why do this here, on a disability, politics, and pop culture site? Because I think that it is important. Because I am personally using various vaping devices, with my start in them being in an interest in better health and not dying of various smoking cancers and other ill effects. Because I think it is important. Because I think it is a scene that could greatly benefit me and other folks with disabilities. Because I think it is an especially good idea to switch particularly if you are of ill health or malfunctioning immune systems. Please understand that these points are also my own opinion and I am not a medical professional.

So here are some random eCig/Vaping words/phrases/ideas with their meanings. I plan to do some more later. This is in no particular order. Feel free to offer corrections, additions, and comments below!

eJuice - this is the center of the Vaping world: the liquid used to create the vapor inhaled by Vapers.

Frost/Ice/Cold - every eJuice labeled as being cold or cold in some way usually means that it contains mint (rare) or menthol (common) flavoring. This is just as important if you are looking to avoid it as if you want it!

Spinner - a spinner is a battery with voltage control input manipulated by a marked disk on the bottom of the battery. The marks are usually on the body, and you change the power by turning the ribbed (usual) disk to the desired mark on the body. While the marking methods can differ, this always means that voltage control is changed by that "spinning" disk.

Analog - a typical cigarette product.

Vape - to vape is to inhale the atomized vapor created by eCigs and modes. It is to eCigs as smoking is to analogs.

Vaper - an eCig user. Also: a label worn with pride and with a resistance to the status quo of nicotine delivery.

Vapor - the atomized mist created by eCigs and Mods.

Mod - a vaping device is more than a decorated battery. Sometimes the actual battery is a separate product, contained within the mod. Mods are products that have more finite control over your experience, may have digital displays, and can come in very utilitarian or highly stylized models. Mods can also refer to vaping set ups altered by DIY vapers. 

Thursday, November 14, 2013

ProPatient: Shots in my Spine!

Recently I had steroids injected into my lower spine in order to combat pain and limited movement in my lumbar region. I have bulging disks, and one has gone so far as to tear and leak somewhat. This has been a problem for a few years, but recent MRI results showed that I know had arthritic and spinal stenosis changes in these lumbar beauties.

First, a picture of the beautiful fall colors in our yard to reward you for going on these jaunts with me:

A snapshot of beautifully brown, red, tan leaves right before the cold snap.
I planned on more pictures, then the cold snap happened.

Those changes in my spine triggered a different reaction this time, and the lab coats decided it was time to do something else. We had tried habit changes, exercises, physical therapy, and I was having some temporary luck with a TENS Unit. A new, longer lasting but still probably temporary effort was determined to be appropriate: epidural steroid injections.

It has been a little while, and so far, so good. I now have a spot on my back that does not experience chronic pain, and it is amazing. I am really happy with it so far and hope that the change hangs around for a while. Since I have a lot going on, I can not give a clean opinion on it like someone that only had this issue and then this procedure could produce. 

Prepping for the procedure  considered "outpatient surgery" by my medical system, was almost non-existent. If they offer sedation and you want it, you have to follow that non-eating/drinking thing. I have seen so many variations of that damned rule, and so many hospital staff breaking it that I have little respect for that blasted thing. I did take their twilight this time, but I want to learn more about how this is done and will probably avoid it the next time so I can share that with you.

The only things you need to bring are your patient bag, boredom toys, crafts, reading, and a driver. Plan on taking it easy for a day or few, depending on how this sort of thing usually alters your general well being and stay away from lifting heavy stuff  or having to sit in the same position for a few days.

The folks that worked on me did not even need jewelry removal, except if I had body piercings in the area that was slated for imaging. Everything was professional and quick. 

I had the procedure on a Friday, they called Monday to check up on me, and I see them in a month to review how it went and whatever we need to do next. I am very happy with it so far, and only if this is very short lived will I consider it not worth the effort. Right now I am irritated we did not do this sooner, and bugged that it is not a permanent solution - both only problems because I am happy with the result.

Wednesday, November 13, 2013

Thoughts on a Poly Paper

A G+ friend posted this article, and asked my opinion on it. I found my little soapbox and the energy to climb on it for a little while, and I thought I would share the results with you. Life has been hectic here, the reinstatement of coverage means I am running back and forth, making, breaking (stupid flares!) and arranging appointments.

The following has only been edited to remove social niceties and make more sense as a blog post. The meaning, if you can find any, has remained intact!


The poly article from the UK can be found here.

Hi! Sorry it took awhile to get to this, but I wanted to give it some solid attention. Thanks for asking me what I think, here! I am going to make some notes as I go, so I do not forget anything.

Interesting that the author assumes that while thoughts regarding sexuality get attention in poly relationships, that issues regarding class, education, race, gender, religion and other issues do not. I would argue that all those issues get the same, if not more attention as they do in a monogamous relationship. But a lot of the ins and outs of relationships in general are like that, included in the basics of all intimate partnerings but not often touched upon in poly specific materials.

I started to feel odd and left out by the author, fitting only a few of the list of presumed identities being thrust upon me by assumption, you know? The thing about poly families is that they continue to identify with the communities they already know and embrace, whether that be the LGBT/QUILTBAG communities or a group held together by racial ties or religious affiliation... You do not stop being what and who you are just because you discover that your ability to romantically love is qualitative rather than quantitative.

Something I thought the author ignored is that most literature available on the mass market on sexual differences starts by coming from largely middle class white men and rarely women. The first literature I saw about folks that are trans was about folks that were white, gay and white, pervy and white, intersexual and white... Since that is still the narrative that is most accepted by the people that hold the keys to the mass market, that is what we largely get. The Internet was the same at first, but now anyone that can access the 'net can write about their experiences. And maybe even get taken seriously.

After reading more, I think that perhaps I was initially too harsh on the author of this work. They are criticizing the existing material for obvious failings when it comes to addressing issues important to everyone outside of the “standard human” or even “standard USian” type: racial justice, actually economic opportunity equality, gender issues… Now, on the other hand, had these white (really, we are still using “European stock?” 1895 called and wants that term back!), middle class, mostly male, mostly college educated, mostly Christian, mostly Western folks tried to include issues of which they had no real familiarity - we would have pilloried them for speaking for other folks. 

Rather, we need to make room for those voices, I think, to speak to their own truth. What they could have done was include voices with experiences vastly different from their own, and they are responsible for not doing just that.

I think the truth is that we come to polyamory on our own, out in whatever world we live in, and some are able to act on that because we have more societal freedom, and some are free to act on that because they are already so despised, so disregarded that one more “sin” does not matter. Maybe there are a lot more of us out there, unable to do so much as a Google search free of fear of being discovered, rapidly unemployed and ostracized or even physically hurt or killed. It is true that “family focused” jerks like Rick Santorum have started using poly families as their new big scary thought for the USian public, and folks are not ready to take that kind of bigotry seriously because we are all seen as a kind of outlier, by desire or by sentence.

I think that the author was brave, taking a little understood and derided part of her life and using it for a professional paper. Kudos to her! And it is a good read, with solid information. By being a woman writing about polyamory, she is contributing a work that is not as “mainstream” as some of the authors she sites. One thing I have noticed about various movements is that they purchase mainstream acceptance by being represented by mainstream bodies. These white, middle-classed, college educated men putting out poly works will help gain mainstream acceptance. I would like us to be a solid community accepting of all comers first, but it rarely seems to happen that way.

(Thanks for giving me a heads up! I liked the piece, and feel honored that you asked for my take. I hope you do not regret it now! - my personal note to the person asking for my opinion. I explained that I might use my side of the conversation as a blog post and the idea was met happily.)


I hope that you, dear Reader, do not regret how you spent your time just now. If you have thoughts about my thoughts about this paper, please feel free to discuss them below. I do respond to comments and I like getting them (for the most part, the Blogger filters help a lot with unwanted spam!). 

Thursday, November 7, 2013

One True Cause

I find little credibility in the One True Cause argument. Someone else has probably come up with a better name for it, but a quick tour through Derailing for Dummies has left me unsatisfied. Make no mistake, I find D4D otherwise very useful and like it quite a lot! Give me a minute, and I think you will find that "One True Cause" is used frequently as a derailing and discrediting tactic.

To clear this up, I do not mean "cause" as in cause and effect, although that is also a logical fallacy. I am using "cause" in One True Cause or 1TC or OTC to mean a situation, bigotry, societal failure, civil rights issue... the sort of causes we gather around to solve, resolve, improve, remove, make better. The intent is to make your cause less worthy of time, attention, and effort than their cause.

The One True Cause is this: why are you talking about/working on/devoting time and energy to X cause when Y cause is more important, more universal, more pressing and/or more personal? The OTC shares mental real estate with the Oppression Olympics, although the person committing the logical fallacy need not believe or be touched by either cause, they just want to be done with yours.

A recent example I have seen is this paraphrase of mine: how can you talk about Glenn Greenwalt's pal getting detained and the chilling effect it may have on free speech when Greenwalt is a lying jerk and other people have been treated worse? Here, I respectfully posit that one can care about the assault on free speech via detention of loved ones no matter how much one may dislike the people in this particular story and even still care about the dishonesty and ethical questions raised by the same persons. I can think that GG looks like a lying jerk and still beat the drum of free speech.

A common OTC argument is often brought up regarding US drone bombing. We mustn't concern ourselves with the innocents murdered in the never ending search for "top Al Qaeda" operatives because that would diminish our ability to kill the "right" people in Pakistan, Yemen, Afghanistan... over there. Except that innocents murdered in a bloody attempt to exact justice is how this all started, whether you think it started with 9/11 or the use of Afghani people as chess pieces to fight a Cold War with the USSR, or, or, or...

Admittedly, it may be hard to drag our focus from getting through our own days, fighting the oppressions heaped upon us, scraping to put what we can on the table at dinner time for our loved ones to give a damn about people exploded out of existence while doing the same damn thing over there... someplace far away, some place filled with brown people struggling the same struggles and (just like us) never earned the need to fear random death from above. 

As a disabled person raising a ruckus, I see the One True Cause fallacy all the time. How can I complain about the lack of accessibility at the local Pride Fest when that just give critics more fuel to try to shut it down? Well, I can tell you that as bisexual woman with disabilities I could not cross streets because beer booths had deliberately blocked curb cuts. How can I, a poor white lady, spend time on race issues when I should be focused on poverty? Well, my daughters go to the same schools that are neglected because there are not enough white faces in those schools for the people in power to care about them. Even if they went to lily white schools, better education for "inner city" or "deprived" schools means more skilled workers and smarter citizens which increases economic opportunity for everyone. 

Often One True Cause is used with some legitimate feeling, worry that this other cause will suffer if people are not singularly devoted to it. People and their issues can be complex, and OTC often ignores the intersections that exist in social justice, in caring about freedom and real opportunities for all peoples. But just as we can love our parents, our significant others/spouses, our children, and our friends and extended family - I believe that we can care about more than one cause with legitimate depth of feeling and commitment. Some of us must do so, whether we ever wanted to or not. Just inside our walls here at home we are directly concerned with disability, neuro-atypicality of various types, feminism, poverty, school quality/funding, the Affordable Care Act/healthcare accessibility in general, religious freedom, racism (our neighbors and our children's peers are more melanin gifted than our family), QUILTBAG rights and issues... 

OTC is just one more minor oppression. OTC is other people telling you what causes they think you should support. OTC is just one more way to exert control, but worse since is is usually done by social justice folks to other social justice folks. So it is likely to be listened to, likely to bypass the filters we put in place when we are dealing with folks that could not care less about making the US a more just place. This often comes from people we respect, trust - folks we value in some way.

So you see, we had to learn to juggle many interests and that is just a brief overview. OTC has no place in our social justice cosmology. OTC is different than picking the battles that mean something to you: I get that.  One True Cause desires to denigrate other causes (others' causes?), and that is not cricket. On a good body day, I can actually chew gum, pat my head and rub my tummy all at the same time. But do not hold your breath waiting for a good day, I have less than a handful of those a month right now. The ones I get - I know how to spend them!

Wednesday, November 6, 2013

PatientC Manifest

Welcome to me: the me before I even get up, the base physical me, the challenges in my day, and what I conquer, compromise, and coddle to get to you, Dear Reader.

There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.

The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)

These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.

Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.

In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.

About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).

All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.

Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.

I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.

I think I am almost done.

I have been hypoglycemic for two decades, controlled through diet. 

I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself. 

I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old. 

I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.

I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable. 

I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.

I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still. 

Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.

And the migraines. Wow, the migraines sometimes...

Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.

(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)