HAWMC Day 2, Word of the Day

Word of the Day Post! Go to dictionary.com and write a post inspired by their WOTD – or grab a dictionary (or any book) from your bookshelf, open to a page, and write about that word. Can you link the word to your condition somehow?

Okay, I can do that!

I picked insidious.

–adjective

1. intended to entrap or beguile: an insidious plan.
2. stealthily treacherous or deceitful: an insidious enemy.
3. operating or proceeding in an inconspicuous or seemingly harmless way but actually with grave effect: an insidious disease.

I believe that the implications of insidious in relation to lupus to be plain. So if it is not, just imagine an invited guest that invites themselves into every aspect of your life, and is almost exclusively bad – very rarely neutral, never a beneficent presence. Every once in a while, your life may level out a bit; maybe even enough for you to think that your guest has perhaps gone away. Oh, no, your guest has simply been painting the exterior of your home a fragrant, organic shade of fresh feces.

Lupus/SLE is insidious.

The Health Activist Writer's Month Challenge (HAWMC), Day 1

HAWMC Day 1:
Health Acrostic Write an acrostic for your condition or the word HEALTH.


Living
Under
Perpetually
Unsatisfying
Situations

Okay, yeah, that works - particularly the aspect of never being able to dependably make plans.

This writing challenge is held by the WEGO Health Portal, and I see it as a really good idea.

I am going to keep up on the HAWMC, as I think it is a great idea, and may help me to find some direction for my writing. I am, of course, getting into it late in the game. I will tackle the topics as I can to catch up. If that is not possible, or I get really sick or something, I will still do them as I can.

On Planned Parenthood, O’Donnell, and Beck

So, unless you store your head under a USian rock, you know that Planned Parenthood was, and is, under attack by the right wing here in the US. You also know that the Democrats to an all-to-rare stand on that issue and the EPA. Online, and in the news, there were plenty of well-spoken, well-written testimonies about Planned Parenthood. Out of all of them, I found Lawrence O’Donnell’s piece on The Last Word to be remarkable, and perhaps able to reach both those directly and indirectly concerned with Planned Parenthood.

Blog note: I am an avid (rabid?) watcher of MSNBC. It is on most of the time in our home. I am also someone that often criticizes the station when I feel it gets things wrong, or when it adds to the oppression of some to the benefit of others. I am also one of those never-satisfied liberals that always thinks that we (humans) can and should do better in all things. That the fight to acknowledge each others humanity is ongoing and it is the one fight, above others, that is worth fighting, always. So, potential bias and definite perspective stated, we should move on…

The Last Word piece is here, and you should watch it: “Rewriting Lies on Planned Parenthood.” The original lie came from John Kly, and was definitely worth rewriting. Our host offers up insight on how the echo chamber works, and how it can ruin a person’s perceived integrity. What I noted with great interest was what came next – a reading of a letter from a friend dependent on Planned Parenthood. What was in the letter mirrors the feelings and needs of thousands of women in the US. O’Donnell’s reaction rang true to me and I have great respect for the courage it takes to show those moments of vulnerability. Our culture does not encourage those moments, and actively discourages them from men in particular.

Of course, the piece did not go without some criticism. This is Glenn Beck, and Lawrence O'Donnell’s response to Beck’s response to O’Donnell: “Defending Planned Parenthood.” According to Beck, only “prostitutes” that need “400 abortions” use PP. O’Donnell is able to put that down with ease, and far more grace than I could have mustered, to be sure. Other noteworthy content includes a meta commentary on the nature of commentating on television which would be well worth watching by itself.

Planned Parenthood’s response to Glenn Beck’s hateful claim is here: Planned Parenthood Press Release.

Although I want to dedicate an entry to it shortly, here is my CrowdRise Planned Parenthood fundraiser:  Lizz Winstead’s “Planned Parenthood, I am here for you!” Tour.
 

I had more to say, but I think I am out of spoons.

SmartAss Protips: Eyeglass Donations

This is just a quick hit, because I needed to look this up myself today.

People that wear prescription glasses sometimes have this problem - after a couple of different sets, you have a stack of glasses you will never wear again. What do you do with them? They were costly, you do not want to throw them away. You hold on to your most recent old pair, in case your current ones break - or at least I do, having run into that before! But the rest? Especially if you are part of a family of glasses-wearers, they can stack up.


Well, there are plenty of people that can use your old glasses!


There are several organizations with many, many drop off locations for your used glasses. Some also take sunglasses or non-prescription reading glasses. So if you have old glasses, give them to a organization that will get them to people that need them locally to globally.

Lions Club
One Vision
New Eyes for the Needy



I am taking our old glasses to a library in Indianapolis, as they collect for the Lion's Club and we visit our neighborhood library often. 

If you know of other places that take eyeglasses donations, please leave their information in a comment. Thank you!

SmartAss Review: Pill Glide

Just recently I had to go pick up my prescriptions, and while I was waiting around, I saw this: Pill Glide. It was in my local CVS, available in strawberry and grape flavors. This company also produces FLAVORx Pediatric Flavoring – for making your kids’ prescription liquid medications more bearable. Pill Glide comes in a one ounce spray bottle, which advertises as being 200+ sprays (each use is two to four sprays).

This essentially functions as a flavored, sweetened pill lubricant. My theory is that you might also be distracted from the discomfort of swallowing a pill (if that does, indeed, bother you) by the terrible flavor or artificial sweetener. I have no trouble taking pills most of the time (if you do not count the simmering resentment that I must do so), but I thought this might prove of some value – to recommend to folks that do have trouble, or to have handy when I have some plague with sinus drainage.

The directions are fairly simple: “Coat with Pill Glide (2-4 sprays). Place tablet or capsule on tongue. Swallow immediately with water.”  This is not supposed to be a substitute for having a drink handy. A lot of us dry swallow when convenient, or when we either have to or go without our meds, I know. I also know that this is not a good thing, as most pills are designed to be taken with fluid. I do not know if this would help with that, but my guess would be that it would. However, if you were stuck with Pill Glide and no drink, I suspect that it would work.

Pill Glide ingredients include the following: purified water, glycerin, sorbitol, xanthan gum, neotame, natural and artificial flavors. Buffered with: sodium citrate and citric acid. Preserved with: potassium sorbate, sodium benzoate, and propylene glycol. Yes, this has caused my spell check to tremble with rage! It is a selling point that the product contains no sugar, no dyes and no drugs in and of itself.

I think that it tastes terrible, but I hate artificial flavors and sweeteners, so I can hardly be fair. Honestly, it does taste far better than some pills I have gotten stuck in my throat, or pills I had to cut and therefore tasted when taking. So you will not catching me just spraying this on my tongue for the taste of it, but if I have to cut pills up, or my throat is already sore, I may very well use Pill Glide to make up the difference.

Surprisingly, I did not feel the edges of the pill as I swallowed, which I usually do. So this throat lube may have actually made it a little easier to do. Now, this was a large ibuprofen, 800 mg. I figured that was the largest I had right now, and probably one of the more commonly used prescriptions and therefore a good landmark. And I could use it right then.

My youngest daughter, 11 years old, said that although she could still take the half pill she takes at night, it was not as bad. The next two days she asked to use it with her nightly half-pill – so I call that a thumbs up. Our 14 year old young lady said she would use it if she felt the need and she does not mind the taste. The D man said that “it tastes like strawberry Jolly Rancher,” but did not notice a difference in the actual act of pill swallowing (only very large pills bug him). Last, but not least (I think he thought he would get out of it!), my G man said that it was indeed slick, with a sickly artificial taste to it, saw no difference (and usually has no difficulty).

Considering the entire house – only one person liked the taste, but we all saw how Pill Glide could be handy if one was having difficulty swallowing pills. So our final verdict is useful, not very tasty, but still better tasting than the tastes it can cover up. So thumbs up for Pill Glide.


Pill Glide’s contact information:
FLAVORx, Inc, MD 21046
http://www.pillglide.com
http://www.facebook.com/pillglide
1.866.370.2337
support@pillglide.com

Pill Glide’s FAQ is here. I bought mine for $5.99 (I think) at CVS. I bought strawberry, but they also had grape. It is also available at Amazon, in a handful of other flavors (strawberry, orange, peach, and bubblegum). Oh, and their homepage has a “live chat” option if you have any questions, but I cannot vouch for that because I did not use it. It did pop up and beep at me, though, so I assume someone was available if I wanted to chat.

Blog note

Haha! I have broken the “Upcoming” curse. Previously, almost every time I have posted about what I have in the pipe for this blog, I end up not posting for a while. So I was nervous about doing so yesterday. And yes, I did get a car, and I am very happy about that.

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.

Stating the Obvious on Medical Costs

In editing this piece, I realize that it is fairly hot and heavy handed. I simply cannot apologize for my vehemence, but now you know that it is there.

Many don’t take prescriptions because of the cost

I saw this on abbyjean's Tumblr.

Wow, LA Times, really?!? Gee, next they will find out that people break compliance with follow up or specialist visits due to money or circumstance. Holy fuck, do folks really have their heads buried quite that deeply up their own asses?

Yes, people want to follow up with their doctor’s orders, recommendations, prescriptions, suggestions, and referrals. This is why low income folks have such terrible compliance levels. Fucking hell. I can think of three big roadblocks right off the top of my head: no money, no time off from work or childcare, and no ride. We can dig deeper: some people are neglected and abused, at home and maybe at previous providers. Have you shamed a patient away because they were fat, slutty, or sloppy*? Did you do it with some snide comment in the hallway you thought they couldn’t hear?

We want to get better, just like everyone else does, dammit! There’s just a lot in the way that you cannot see, because you see a diagnosis waiting to be made, not a whole person. Can you just take one damn minute before you put your hand on the blasted door knob, and deliberately employ a gestalt point of view for just sixty bloody seconds? Are they seeing you on Medicare, Medicaid, or their own dimes? If the patient has transportation programs, sliding scales, pharmacy discounts, and/or drug manufacturer discounts available to them do they even know? Because it is just as bad as having no options if you do not know they exist.

Sure, maybe you and your staff just cannot handle trying to keep track of that on top of every thing else you have to manage. I get that, I really do. So help the economy by hiring someone to do it for you – all they would need is a high school degree, some empathy, and some tenacity. With the additional people you can help, maybe it will even cover an additional employee.

* Fat, slutty, or sloppy were just a few adjectives I have heard office or hospital staff use regarding patients. I offer no judgments to folks that are fat, appear to numerous sexual partners (people suck), or folks who have a hard time bringing themselves around to what their community considers acceptable appearance standards. Neither should their damn medical professionals!

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!)

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.)