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! 

SmartAss ProTips: Your Med Backstory

I want to have some resources here for you to use if you want or need them. While writing a piece on Go Bags, I realized that I had not talked to you about putting together a basic medical summary. This is the first thing you want in a hospital/medical BugOut/BugIn bag, or any travel bag for that matter.

Nissi (a black pitt) and Lucky (a tawny Chiwowow) keeping the neighborhood safe by sniffing a suspicious tree.

We will get into what Go/BugOut/BugIn Bags are, why you may need one, and a guideline of things to consider when making one. But before that, and Go Bag or not, you should have a MedStory!

MedStory is my own term for a unofficial medical history. Anything written my you will be considered unofficial - remember, patient reporting is considered the least reliable source of information around by docs, etc - but that was before "fake news." 

Even if you are not doing the whole Go Bag thing, you should do this. Even if you are healthy, you should do this. Keep a copy in your bag, in your car... You know your life best, so keep it where you know it can easily be found in an emergency. Since this will be too big to fit in the typical wallet, a note near your ID that indicates where your history is stored could save your life or the life of someone else if you are a organ donor.

I am going to give you what I think would be useful, and you can use or change it as you see fit for you and your family. We are going to cover information personal, medical, and medicinal. If you have a suggestion to add, please comment below and we will all benefit!

When you write your medical summary, imagine the conversations you normally have with medical professionals, only this time they need to know and you are unconscious with no family or friends present. There is a lot of information to think about here. You do not need to let yourself be overwhelmed by it. Take each suggestion one at a time. 

Ideally, you will have a summary for each family member. Even if you are around for your spouse, kid, or parent experiencing medical distress, this stuff is stuff you want to just hand off and not worry about - you will have enough worries.

Start with the basics: your name, address, phone numbers should be at the top. Another very important piece of information is your emergency contacts: their names, addresses, phone numbers. Who is your next of kin? Who is authorized to receive and act on your medical information? Do you have Advanced Directives (also called DNR orders). Do you have a medical power of attorney? You should have a copy of that in here, along with a notation of the location of the original, should it be necessary. Are you an organ/blood/marrow donor or on a registery?

While the rest of your medical information is covered below, next you should list your allergies, whether you think they would be an issue or not. Example: an egg allergy could really mess you up if you are given certain vaccines. So list them all is my advice! Make a note of each allergy & severity. Iodine makes me itchy, but penicillin will kill me.

You also need to mention any conditions, illnesses, or whatnot. Some people will list psychological diagnosis, and they can be important, but others are not willing to disclose them without establishing, personally, that it is pertinent and that they feel safe doing so. Sometimes an illness can be figured out by the meds you take, but do you really want people guessing at that moment?

You also want the names, addresses, and phone numbers of any health care practitioners you are currently seeing or have seen recently (last couple of years). If you have seen a specialist, you will always get asked why you saw them, so list that too (example: saw a pediatric gastroenterologist for stomach pain that resolved on its own or a physical therapist for SI joint dysfunction that improved with a completed course of PT). 

Now you need to detail what you are normally putting into your body. List any over the counter (OTC) or prescription medications you take, no matter how innocuous it may seem to you. If you take ibuprofen for occasional headaches, they say so. Please keep in mind that many prescription medications are used for more than one application, so list the reason you are taking it. Also list any herbal or homeopathic intake. 

I want to say if you are taking anything illegal, you should put it here because sometimes your docs really do need to know, but you have to make that call for yourself. 

So that is a good start. I will update this article as experiences or conversations make me wiser. If you have a tip, let us know below! I am considering making a Google form or something, what do you think?

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.

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!

Our Poly Family

One of the things I want to do with PatientC that is not medical or disability related is to get more material out here that is about real life poly families by talking about mine. I was asked some questions to help with a friend's paper, and that got me thinking. You know what happens when I get thinking, I post it here for your potential cerebral pleasure!

Answers to questions asked for a friends’ paper on poly families:

• Okay, that is some list! But it does look like a very good place to get started, good job there. =) I may use what I write here as the skeleton for a blog post unless that would weird you out. I think my responses are in order, but I may have missed some {questions} - if anything does not seem to synch up, feel free to ask for clarification.
• Yes, as far as the Minions go, we have always been this way. The only change was when we all moved in together.
• They have always known {we were a poly family. Well, at least since they could understand words like that}. Now, if you are asking when did they figure out when we were "romantic" by a more complete definition of that word than you have when you are three, probably a year or {few} after we started living together, so 8 years ago, maybe? They would have been 9 and 7, I think.
• I raised them with the idea that although most adults are taught they can only romantically love one other person at a time, I practiced a romantic love that was like my family love. They both knew that I love them completely but differently, and that was how I felt about their Dad and the Boyfriend. Now, when that idea was challenged at school One came home saying "Mary's mom says you cannot have a husband and a boyfriend at the same time." I said, "Well, tell Mary to tell her mom that indeed I do and she is a close minded bitch!" Then we all laughed and I delved more into definitional polyamory to help them explain to what friends they decided were able to handle it.
• They {my girls, otherwise known as The Minions} seem mostly nonplussed. They do use it as a litmus test to see if a friend is going to hang around after they find out, I suspect. One has stated that she will probably not be poly, that love seems complicated enough to her right now. Not that she was judging us, she wanted us to understand. =) Two is a little more militant.
• Yep, we are who we are wherever we go and whoever we meet (representatives of the state being the exception {and we tone it down a bit at school functions}). We will usually wait to see if a neighbor is staying or if we like a new group well enough to hang around and need to explain if it is not plain at the start.
• For the most part, they {our neighbors} do not seem to care. If they disapprove, they keep it to themselves. Some of our neighbors thought it odd at first, but they are mostly older black matriarchs that care more about our kids and our yard being well tended than what we do in bed. We joke that we are those "crazy crackers on the corner" and get along pretty well, now that I think about it.
• No, they {the Minions} seem to have a fairly easy time of that. They have been teased and rejected for not being Christian. Hey, that may explain it: the people that would judge their poly family are already blown off on the religious question and never get as far as their poly family. And family structures were already becoming more fluid before the economic downturn, now everyone has extended family living with them or broken up partners still living together... I am not saying that the nuclear family is dead, but it has been coughing up blood as far as I can personally tell.
• We are all supportive of the Minions. G and I, other than a six month break at one point (long story), have been together for over twenty years and he has always been an accessible Dad. {The Boyfriend} and I started our odd journey right before I was pregnant with {the eldest}, so he has always been around for them. One of the perks of ploy is that the girls always have a grownup around. And one of us almost always finds a way to relate to whatever they may be going through at any given time. While not being able to sign things for them or stuff like that, {the Boyfriend} has always been "an adult that should be respected and listened to like Mom and Dad." 
• No, {on me being open and poly} I have not seen anyone {else} seriously for years. Being sick complicated that issue so I do not know if I would have otherwise. But they would have needed to be cool with my home life and my home life would have needed to be cool with them if it was serious. I have had sex with a friend or two, but with no eye to changing standing relationships.
• Umm, hopefully that is a good start. Whatever strikes your fancy to ask about or discuss is okay so far, so feel free! {Same goes for you, Dear Reader, feel free to chat below!}

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!). 

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. 

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!

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.

Every Day is Hallow... Aww, You Get It!

I love Halloween. Every day is Halloween! I have been a horror hound since I can remember. I fell asleep at the drive-in during An American Werewolf in London, and then had nightmares about the undead Nazi attack. 

(I know it is All Saints Day, but I was pretty sure that if I made two posts in one day that the fabric of my universe would fall apart... So enjoy this with your hangover. Or not, you be you.)

The annual ritual of walking to the VHS rental place for the best of what it had to offer around this time of year was always awesome. This was back when a single, new-ish release would run you about $80, so everybody rented. Only the Star Trek movies were important enough at my place to actually own. Everything else around the house was from the brand new bargain bins of tapes, where we could find the occasional old sci-fi treasure or a Roger Corman classic. The Terror with Boris Karloff and Jack Nicholson - we had it. We also had Nicholson in Little Shop of Horrors, he was the dentist's "masochistic" patient. It was a bit part, but I am pretty sure the reason the movie lived on...

I remember the first time I watched Michael Jackson's Thriller, I watched it as a John Landis short, because there were almost no black people on MTV until then, 1983. The Landis/Jackson dispute over rights was finally settled this last August. Thriller is one of those amazing mixings of genres that elevates both to something new and different. Without Thriller, there is no Dragula. 

Wave hello to the grandfather of horror there at the end, Vincent Price!

For years, our mom made us dress as "hobos" (I know, I know) because our great-grandmother liked the costume. The Minions go-to costumes are, of course, vampires, because there is no shortage of white makeup and cheap velvet around here. 

You know what, I can come up with maybe twenty or so decent costumes that include, involve or even mimic disability. Sigh. 

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.

Help for ALL Surviving Domestic Abuse

Republicans Back out of Domestic Violence Help


All they had to do was renew the damn bill.


In a discussion online about this article it was mentioned that undocumented working women that were being abused would be "rewarded" by the proposed changes. I got really angry and responded:


... REWARDED?!? REALLY? What kind of "reward" is it when you have to get your ass jacked, sometimes for years, before you can get it? And lawbreakers?!? Give me a goddamn break! We have protections in place for mass murderers on DEATH ROW but some lady that came here for a better life and can't navigate the multi thousand dollar convoluted piece of shit we call an immigration system is fair game?!? Holy hell!


So then I took a deep, cleansing breath while waiting on a reply. I am not posting the other side of the conversation here because it was casual and there was no shared understanding at the time that I might extrapolate on my responses for my blog.  


Okay. Human rights are not contingent on being a citizen. Full stop. And there is nothing about DV/DA help that actually makes one a citizen. So no crime is "washed away." Offering a minuscule number of undocumented women visas only gives them a bit of temporary help, moving one issue out of the current stressors while one works ones way out of the living hell that is domestic abuse and/or violence. It will not make these women citizens, not by a long shot, and to argue that it is a reward of any kind is disingenuous at best, and  out and out lying manipulation at worst.

I am so fucking tired of people acting like a accident of birth that put them within the fabricated and stolen USian boarders some how makes them special or better than other people. Or that other human beings are some how less human or their suffering is less important because their moment of birth put them (usually, in these arguments) south of an artificial line made of murder and theft. The fact that we are having these "rights of birth" arguments in a country founded on the idea that birth status does not make one better or worse than any other person is disgusting.

My point above, about mass murderers, is not to say the people in our prison system should not be protected from the tyranny of the system or their peers. They should be subjected to the cruelty of their sentences but not a jot more. My point was to juxtapose one "law breaker" with another, highlighting the differences in protection each receive. One has been convicted of taking lives, the other committed, or their parents committed, a crime of geography.


But there is nothing in our laws that makes one birth better than another, something that seems to be missing in every one of these arguments I have seen. If your main focus regarding help for the survivors of domestic violence is illegal immigration, I have not no help for you. I believe that this serves as an illustration of exactly how much some people are being distracted from the issues at hand. All people surviving domestic abuse, assault, and violence deserve help. No one deserves to live in fear: man, woman, child, citizen, non-citizen, cis or trans, disabled or TAB. This is about human rights, and and what we do about it will show who we are as a country.

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.

Lupus Gimp, How Does Your Garden Grow

With gardening ProTips!

Whether it is in a small pot on a table, or in the section of yard I have claimed for my garden, the smell of freshly turned earth turns me on – not in a horny way, but in a “this is really real life” special kind of way. It helps me feel productive and connected.

I call it my garden because it is my idea, and I am the one that insists on having it. Everyone in the household sees the benefit of it. Everyone in the house contributes effort to it, either because they want to, because I ask them to, or because it increases their allowance. It really is our family garden.

I am not able to do a lot of the physical work of maintaining the garden. My men folk did most of the tilling (I could barely start the damn thing, let alone hold it while running). I did the actual planting, since I knew how to do it – and I would not be mad at anyone else if the planting went bad. The girls prepped the ground for and planted the marigolds around the outside of the garden fence.

Getting out in the garden is trouble to begin with, precautions have to be taken. Bug bites hang out for months on me, so bug spray. The sun is trying to kill me; so long sleeves, pants, gloves, and a hat are mandatory. Sunscreen is just as necessary. I have one of those fatigue-fighting floor mats to use to get down on the ground so I do not waste energy bending or squatting. I can cut this mat to fit rather than trying to squeeze myself onto one of those narrow knee pad panels. I try to do most of the work early in the morning or in the last light of the day to cut down on heat and humidity exposure.

The work has to be broken up into small, 15- 20 minute blocks, or I run myself into the ground far too early. I can only do a few of these before I either need a large break of a few hours, or I may just be done for the day, anyway. I can go for a bit longer if I know that no demands will be made on me later –either physical or mental, because the fatigue shuts down all systems.

Even when I remember to do all of the above – take these precautions and more, there is still a price to pay. For even two to three hours working, I will pay for it by being near useless for up to a week. It is unpredictable. I can influence the odds, but not the roll (I hope that analogy makes sense). I know I will be down a day or two, minimum. Down meaning down to minimum activity: hygiene, dressing, feeding myself, maybe some mindless web browsing. Trashed is also always a possibility: easy clothes if not sleeping clothes, easy food, moving only when I have to do so, asking other people to get things for me, doing nothing I may need to remember later or have any competency during. My right hand will always be near useless for 3-7 days.

Over the years, we have acquired, piece by piece, good tools. Good tools cut down on body wear and tear. Believe it or not, I used to break the garden ground with a shovel – I had the strength and enthusiasm, and we did not have a tiller. Now we have a tiller. Good gloves keep my hands from getting beat up too much too fast. Decent hand tools with soft grips have done wonders.

D has laid ground cloth this year, which is awesome. It removes about 80 % of the weeding I would otherwise need to figure out. Anyone can weed around the larger plants, but until they get big and obvious, I will need to weed around the romaine and spinach. I will also have to do the thinning. Both my guys are happy to water the garden for me.

We are growing tomatoes, squash (straight, crook-neck, and one spaghetti squash) and zucchini (same type of plant), one green pepper plant, spinach, a romaine lettuce blend, cucumbers, and some small onions. Marigolds are planted around the garden fence in order to improve the view and discourage pests. In pots we have strawberry plants, chives, mint (may have drown in the last rain), and oregano. I planted rhubarb and asparagus in the garden but I do not think they will make it (I should have researched first, instead of going on the package!). If they sprout I will need to transplant them to large pots until I find a good, permanent home.

In short:

• I love gardening.
• Fair division of labor according to knowledge and ability is essential.
• Taking care of myself means I get more done.
• Trust that once you delegate, problems will come to you – do not hover!
• Working smarter is so much better than working harder.
• Good tools mean less work, less wear and tear on the people doing the work.
• Yum!

Do you have any gardening tips? Leave them below!

SmartAss Commentary: Cripple Queers Stay Home

Note: I never thought that I would write a somewhat positive take on a gun show and a very negative experience at a Pride event, well, ever. But here I am.

So, IndyPride was the weekend of June 11th, 2011. My family and I were excited to attend. We have friends all over the LGBT, Intersex and Queer spectrum. I am bisexual, and my girls – much to my own parental pride – feel free to decide who and what they are in their own time. So my husband, my boyfriend, my girls, and I loaded up to head downtown for the Indianapolis Pride festival.

Saturday was beautiful, but hot. There was no natural protection from the sun, but we were prepared.

Parking was a nightmare – many of the downtown spots were blocked off for the event, so we found zero available handicapped parking anywhere near the festival. So D dropped us off a couple of blocks away from the singular entrance. A grassy field needed to be crossed to reach the gate – there was no smoothed path, let alone paved walkway – to use to get in. Fortunately, the folks canvassing for a fund for college to help LGBT youth were at the gate, and I donated, still fairly optimistic about the upcoming experience.

The southern end of the park has a lot of paved walk ways, but few booths. Being near the fountain provided a cool breeze for the few moments it took to pass it. Our first nightmare began as we tried to cross the dividing street (blocked from auto traffic for the event). The people running Circle City Pride apparently decided that giving the bar tents 3 extra, mostly unused feet of space was more important than allowing people to use the city’s curb cuts. They blocked off all of them on all four corners at the ends of the street. One was left on the middle of the north side. I had a complete sense-of-humor failure as I rolled between blocked off curb cuts and eventually had enough, hit my hand breaks, and had a good cry behind my sunglasses (noticed only, I think, by my family).

The north end of the park is completely inaccessible. This made me angry not only for me and the other people at the event, but in general. This is the damn Veteran’s Memorial Plaza, dammit – how on earth are disabled veterans going to navigate this hill and stair infested park?


The festival did block off the far northern paved cross-over, making those of us trying to navigate the tents and booths travel over 4-6 times more ground to get around than the TAB attendees. I spent some time parked at the north east corner, and watched other people using wheelchairs along with parents with children in wagons or strollers curse their luck as they realized they were stuck.

Many of the displays were up small curbs and arranged on dirt paths. Again, this was almost entirely inaccessible unless you have an ATV chair. We eventually were able to find our way to the one booth run by a friend where we knew we could park and rest. Without that, we would have left almost immediately.

While I sat parked, mulling over the supposed message of inclusion of Pride Day and the associated events, my husband and youngest daughter were directed by the one friendly staff member we saw to talk to an organizer. The organizer had no care at all about the issue they brought to her and directed them to speak to a nearby city cop. This… officer, and yes, I have his name, found it appropriate to tell them to suck it up or talk to the military officer in charge of the park. The fucking hell?!?  He was rude, discriminatory, and dismissive. Thanks, Officer Friendly, for destroying my children’s first impression of dealing directly with a law enforcement representative. You are now their idea of what cops are like, in general. Ass.

Navigating in general was difficult, as most staff and patrons never bothered to look lower than eye level while traveling from place to place. Eventually I had no issue poking people with my cane while yelling “EXCUSE ME!” and running over the occasional toe. Maybe you will look for people shorter than your eye level next time, jerk.

So Indy Pride or Circle City Pride was a damn nightmare. Indy Pride was not inclusive. If you are a queer cripple, apparently you should stay in your closet. High on the Hill rocks, though, and was accommodating both at the booth and in their store. So, there was a positive note. That was,well, the only positive note.

SmartAss Commentary: Niaspan Commercials

Niaspan

Oh, how I loathe these commercials for Niaspan. Have you seen these? Wow, these pieces of passive-aggressive, sly, guilt-ridden pabulum are just stunning.

Here is the “brother” version. There is at least one more, but I cannot find a link for it. It is not quite as bad, but still not good. Scratch that, there are three total, and they can be found on the Niaspan homepage here.

I find these commercials to be full of coddling, wheedling, coercive, bullshit. It is hard enough to manage a chronic illness/injury/disability – we really do not need to be badgered by our friends and family. I think the idea that these are “interventions” kind of trivializes the actual purpose of an intervention, you know – giving a loved one a chance to stop and think about what they are doing to themselves and the people around them. To let them know that they are loved and supported, and that this will still be true if they try to change their lives for the better. It is usually reserved for exceptionally destructive behavior.

Take the brother commercial – the speaking brother is chastising the audience brother about the fact that he is not taking Niaspan. Never mind the facts that the brother has made the diet and lifestyle changes that are necessary for his condition. Oh, no – he isn’t doing enough because he isn’t taking this pill! What if he is already taking niacin? Or what if he has a contra-indication, like liver trouble? The speaking brother apparently does not care. He has decided what is best, and damn anything else.

The daughter commercial does not specify what other changes the audience dad has made. But she is going out on an awfully long limb for something that “might” work.

The sister commercial is mind boggling. “I know one more pill… I get it, I do,” No she does not, or she would not follow that with, “I am not taking ‘no’ for an answer.” The gall on display is stunning. Of course she knows best, how it could be any other way is beyond her grasp.

These commercials are demeaning to health care customers. They play into the all-to-common assumption that we, as individual patients, are either too stupid or too lazy to consult with our doctors, do our own research, and make our own decisions.

If you do have a friend or loved on that is dealing with cholesterol issues, it is totally okay to offer your support. As with other health issues, save your advice for when you are asked for it. No, we do not want unsolicited advice – by definition. If we wanted it, we would seek it out and ask you.

While looking for links to the commercials themselves, I found some folks that despise this almost as much as I do at CommercialsIHate.

Niaspan on Wikipedia is here. (This entry is actually about Niacin. Niaspan is apparently prescription strength, time release Niacin.)

Things that Make My Life Easier: Online Rx Refills

“Things that make my life easier” was an idea from Amanda W., and she wrote about it at her home site, Three Rivers Fog. I read about her idea on FWD: Feminists with Disabilities (the site is still there, but is no longer producing new content, which is a shame and I will talk about that soon).

I think that the idea is a really good one, and I would like to lend a hand in helping to keep it alive. So here is my first PatientC: Things that Make My Life Easier!

I use a CVS. Our family has since we moved away from a really great family owned pharmacy. CVS has been convenient for us, and we have been pretty happy with them most of the time. I manage my own ‘scripts along with my husband’s and both our daughters. Unfortunately, that is a fair amount of pills, etc. Recently I have started streamlining our habits and trying to cut out time and effort that is ill-spent (relaxing or goofing off counts as time well spent, unless something else really needs to be done!). So I finally investigated the web site functions offered by CVS.

I could really kick myself for not doing this sooner! They offer prescription refills, transferring prescriptions online, and easy access to your annual Rx records should you need them. I was also able to set up my daughters Rx’s on my account. My husband had to set up an account to give me permission to manage his ‘scripts, but I do appreciate that they do try to keep fraud down.

So setting up the accounts and getting them connected was a bit fidget-filled, but it paid off almost immediately. When I log on to fill a ‘script, it is red if it is eligible to be refilled now, I check the box next to the ones I want, and then click the big red button near the bottom of the page. Depending on your insurance, they may be able to tell you how much it will cost before the next screen. The next screen you can enter when you want to be able to pick it up, just like their automated phone line refills. Once done, you receive a confirmation e-mail, and the stuff has always been ready when we came in to pick it up.

*Note: if you use their customer card for discounts and savings, you can manage it from the same log-on.

*Note: this service is not helpful for refilling prescriptions of controlled substances (painkillers, ADD/ADHD medications, etc…) as you have to deal with the physical prescription, but is otherwise very useful.

The following all have, or as best I can tell, appear to have, online refills available. Some of them also allow you to transfer prescriptions, get e-mail reminders, and whatnot. This is just a quick hit of places that offer similar services based of off a quick mental list and then a scan of their available services. Feel free to add more in the comments section, and I will list them here.

CVS
Walgreen’s
WalMart
Target
Kroger
Rite Aid
Kmart
Meijer’s
Tucker Pharmacy (used to be Tucker State Pharmacy) was bought, but is still around, but if it does have a web page, it is not under that name. Upon a Google street view search, they are still there, but are now a Tucker (Walgreen’s). So they have it.
BioScrip
Marwood Low Cost Pharmacy does not appear to have a web page.
Dr. Aziz Pharmacy does not appear to have it.
Marsh does not appear to have it.

There is No Family Cookbook

Yes, I say that with confidence. You see, at the household here, schedules have shifted around, and the only person with the time (?!?) to cook is me. If you know me, you know that I rarely, rarely cook. I make a decent pot of chili, but that is about it. So lately I have been browsing cook books, internet recipe cites, and the cooking brains of friends and family.

There is no family cookbook. At least, there is not a cookbook that adequately addresses cooking around a family. I know this, because a real family cookbook would say things like the following:

"...you must stir the pot constantly for the next five minutes. Sh when Timmy has his daily meltdown, tell him he will have to wait. If it happens on a schedule, try to plan around it..."

"...Here is a good place to stop if Betty skins her knee. Again. Everything can wait - just fridge the sauce if you take more than thirty minutes. Maybe you should get her tested..."

"put the beater in the bowl and now would be a good time to hold Chad. The standing mixer just needs to be watched for six to eight minutes and you know how the vibration and a verse of "Summertime" settles the child quite a bit. Are you sure that is not colic..."

See, now that would be a family cookbook!