Monthly Archives: October 2014

A Glass Darkly

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“And as to accosting it, I dare not, I could not; when I see it, I am powerless…” – The Watcher and Other Weird Stories by J. Sheridan Le Fanu, 1851.

I can see it out of the corner of my eye, on my right side.  Just…sitting.  Waiting.  Waiting to come alive…waiting for me to make a move.   It is dark, and scary – terrifying, even.

I can’t look upon it directly, lest my unease turn to panic.  No, just knowing it is there is more than enough to upset my calm mood and increase the dread that I first felt when it so easily invaded my bedroom.  I sometimes rue the day I so cavalierly invited it in, but I had experienced such a compulsion – maybe even an obsession – regarding it that, inevitably, my fate was securely tied to it and its mystifying aura.  A fate I encouraged to manifest, it’s true, but I was helpless.  Helpless and now too full of pride to send it back on its way.  A witch, after all, should not be so afraid of the unknown!

So it sits and waits, uncaring that I am surreptitiously watching it, and it is oblivious to my anxiety.  To say it had no feelings one way or another about my discomfort would be a vast understatement!  I think, in some impossible way, it knows I will have to address it sooner than later, but it has time…all the time in the world.

It’s true that I can have an inexplicable nervousness about me at times, and it is also true that I have had many experiences with things I do not understand but…there they are in front of me.  I can live with a certain amount of ambiguity in my life.  I can also live with rituals that have unintended outcomes, experiments that make things worse, and even the eye-rolls of certain people who think I really ought to know better.  ‘Forge on!” say I.  “Life’s full of adventures!” I exclaim.

But this…it’s almost too frightening to bear!  I didn’t think I would be so completely unprepared but it’s painfully clear just how much I had deluded myself into thinking this was something I could easily handle.  No, this will be one of the toughest and most terrifying challenges I have faced in a long time.  Does anyone blame me for putting off confronting it?

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Illiteracy or Laziness?

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Brief medical update:  I feel a bit worse – still have a nightly fever, joint/muscle pain, and all the rest of the recurrent symptoms.  Haven’t gotten a call for more tests (to follow up on the 2 that were abnormal), so I guess I will have to wait until my November appointment with the rheumatologist to find out anything more.

Ok, today’s rant is about the frustration involved when trying to communicate with people who either do not have a good understanding of English (and I am not necessarily referring to non-native speakers), or are too cognitively lazy to understand English.  In other words, I don’t have an issue with people who live in the US but do not know very much English – I happen to believe that citizens here should be able to speak any language they want, as we are (mostly) a nation full of immigrants.

No, the issue I am having is with people I have been communicating with who require several attempts on my part before they can respond in a way that makes sense.  I can tell that they actually DO know English, as their grammar and so on are correct.  But I do not understand why even the simplest of (in my case) emails is replied to with irrelevent and sometimes even angry responses that indicate to me that the person had no idea what I just wrote to them.

I will give you an example of an ongoing communication that I just recently gave up on because I was so frustrated that it wasn’t worth the aggravation.

Sometimes I participate in online surveys.  More times than I would like, something goes wrong with the survey, usually a technical problem.  I will usually note the survey number if I can find it, and then email customer service to tell them their survey isn’t working right.  Usually I am just trying to be helpful – rarely is it ever a case of, “Hey I finished this survey and then got an error page, and now I didn’t get my reward points.”

If I did this a lot, I could see why they might get all snippy with me.  But it’s usually, “Hey this survey said ‘press this button’ but there was no button, and I got stuck in a loop and had to task-manager out of it. Thought you might want to know about this.”

Sometimes the response I get is a thank you, and a note that they have taken the survey offline to fix it.  Most times, however, the exchange goes like this:

Me: I was asked to register for a (name of) community forum through your site, but when I hit “ok” I got redirected to the Google search homepage.  So I wasn’t able to even register for the forum.  I think there may be a technical problem with this particular survey.

Them: We received your email and are sorry for the inconvenience this issue may have caused, but we are unable to award you any points because we cannot verify that you finished the survey.  Please allow until the survey has closed before you contact us again.

Me: But I am not writing you about award points.  I am trying to tell you about a problem I had with the survey in case anyone else is having the same problem.

Them: We have looked into this particular survey and do not see that you have participated in it.  Please try the link again.

Me:  That’s the point – I can’t participate because it kicks me to the Google search homepage before I can even register for it.

Them: What’s the survey number?

Me:  I didn’t see one but you just got through telling me you looked it up and couldn’t see my participation in the survey, so surely you must know the survey number?

Them: We will need either a survey number or a screen shot that indicates you completed the survey before points can be awarded.

Usually at this point I would write a long, detailed email explaining things in a numbered list.  But I don’t feel well today and I sure don’t feel up to doing this just so I can help some company out.   A company who cannot even understand what it is I am writing about, so they just go with the default “customer is bitching about her points” responses.

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October Remembrances

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October is Breast Cancer Awareness Month, Domestic Violence Awareness Month, and a time in which some of us prepare for a remembrance ceremony to honor all who have passed on (that ritual being conducted on Samhain, pronounced “SAH-win”, or “SO-win”).  For more information on Samhain, here is just one of many links:

https://www.circlesanctuary.org/index.php/celebrating-the-seasons/celebrating-samhain

I have chosen to make this post about domestic violence.  Not to downgrade the other 2 things I just mentioned (I have a beloved sister who passed from breast cancer, and I also celebrate Samhain), but because I have a few suggestions for actions that everyone can take which could actually make a difference in the lives (or deaths) of domestic violence victims/survivors.

I will remind my readers that the main focus of this blog is to stand as a record of what my life is like in the 21st century – mostly for my relatives, descendents, and interested friends.  It is a place for me to express my opinions, not a place to provoke arguments or controversy.  I don’t think this will be much of an issue, at least not at this point, as I do not know any relatives or friends who would argue against the existence or importance of domestic violence issues.

I am also not going to quote statistics.  It is easy to see the violence that is perpetuated upon women, unfortunately, on a daily basis.  Even if you never leave your house, it’s on the news and it’s certainly on the internet.  I don’t think any reasonably sane person would argue that it doesn’t exist.

But what I am here to write about is what you, as just an ordinary person, can do to help eliminate this problem.  It doesn’t have to cost money, and it doesn’t even have to take up much time.  But you can make a difference to some woman, somewhere, and I am going to tell you how.

For the edification of people who do not know me well, especially for those born in 2000 and later (i.e., grandchildren, grand-nieces/nephews, descendants, etc), I have just a brief explanation of how this issue came to affect me.

I am a survivor of domestic violence.

Not just once, but a few times, beginning with the very first household where I grew up.  I witnessed it, and I was a target of it.

The reason I go all the way back to my childhood is two-fold: first, to illustrate that violence against females has never really been taken seriously until recently.  Second, it is to show that the effects of domestic abuse can have far-reaching consequences, even for intelligent women with advanced degrees in psychology (I once had a policeman in Memphis ask me, when called to my apt while an ex was destroying it, “Don’t you know any better? You’re a psychologist!”).

There were no shelters, really, back in the day.  I am talking late 1950s up until around 2000.  Growing up in a pre-feminist era, just in time to see the growth of that movement, it’s hard for me to explain what it was like back then.  ALL abuse – child, spousal, and to a certain extent animal, was pretty much blamed on the object of the violence, not the perpetrator.

People did not want to “cause trouble” by raising these issues – though thank goodness people did, or we would still be living in a world where certain members of the populace are blamed for acts of violence they neither started, perpetuated, nor deserved (as if anyone deserves to be assaulted!).

Women covered up bruises and other evidence of violence – and we still do that today.  People saw the evidence but didn’t ask what happened, as it made them uncomfortable (“What if her husband hit her? What if he didn’t? Am I making a big deal out of nothing?”).  The police were not often called, and if they were, it was usually the man’s version of events that was believed (“She fell, she attacked me, she’s making a big deal out of nothing”, etc).

Imagine just for a second that the household was headed by a policeman, as was the situation in my case growing up, and you can possibly understand what a hopeless situation that would have been.  It’s quite different today, thankfully.

I am not going to chronicle in detail the events that led up to me fleeing for my life to a domestic violence shelter in Altoona 4 years ago, because I am acutely aware of how very uncomfortable that makes people.  I was subjected to emotional, spiritual, economic, and physical abuse (thankfully not sexual abuse, not this time anyway – that was an issue growing up, involving a trusted family friend who lived next door).

4 years ago, I was slapped, punched, kicked, tied to a chair, hit with various objects, strangled, smothered, had my hair pulled, spit on, pinched, bit (yes, really), screamed at, had my money/keys taken away, isolated from most everyone, had my spiritual beliefs mocked, had my pets and kids threatened (no, my kids were not living there, thank Goddess), stalked at work, and had my car sabotaged so I couldn’t leave. I was humiliated in public several times.

The long-term effects of this are PTSD, dental issues from having things thrown at my mouth, and probably a lifetime of second-guessing any future romantic involvements I might ever have.   Amongst other things.  I am recovering from it.  This blog helps.

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Blood, Meds, and Tears

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Today’s post is a mixture of my continuing medical saga, and a rant about drug laws.

Follow-up on doctor stuff:  I saw my primary care doctor on Friday 9/26.  He listened to my symptoms, wrote a lot of stuff down, joked a bit (one reason why I like him), poked and prodded and did all those doctory things, and sent me on my way with a paper to take to the local lab.   So, on Tuesday 9/30 (yesterday) I went to the lab and they filled up a lot of tubes with my blood and had me pee in a cup.  I don’t have a problem with tests – gotta have them to see what’s going on.

Later that day I got an email with my test results!  Wow is that quick or what?  Turns out nearly everything is normal except for 2 tests that came back indicating inflammation.  That could mean anything so no big deal; after all, I have had a fever for a very long time and lots of achiness and so on, so inflammation was kind of a no-brainer.

There are still 2 tests out, an ANA and a double-strand DNA, which look for autoimmune disorders specifically.  So hopefully someone can see what’s causing the inflammation.

Edit (10/4): Got the labs back for the antibody tests…and they were all negative. Still, at the bottom of the report, it said

“The possibility of autoimmune disease remains.”

Your guess is as good as mine why this was included.  I guess more testing is needed, though no one has called me to schedule any.

I have an appointment in November with a rheumatologist who, from what I could find out on the internet, is one very smart woman who studied at Stanford and Johns Hopkins (#1 place for rheumatology and autoimmune disorders), and wrote an impressive research paper on inflammation and cell function in autoimmune disorders.  I didn’t understand most of it.  Anyway, here’s hoping Dr. Okoye can get to the bottom of everything.

Original post: So I am not worried today.  I am a bit concerned the other tests won’t show anything, as last time I was diagnosed with lupus they had to draw blood every week for months just to catch it when it appeared (that was 20+ years ago, though).  It’s somewhat common for people to test negative, and it is also common for people to be told to forget about it when they do.

Since autoimmune symptoms are so weird and varied, there is always the risk of sounding like a hypochondriac – though at least my doctor could actually SEE the dry eyes and dry mouth (and fussed at me about not carrying around water at all times), validating the Sjogren’s diagnosis (which is an autoimmune disorder).

Of course he didn’t see the Raynaud’s (fingertips changing color in response to cold) as it wasn’t happening that day, but he felt my hands and said he could feel inflammation (how, I don’t know but his intern could too) and told me “the good news” was that I don’t have rheumatoid arthritis.

Edit (10/4): See?  I could sort of see that coming!

Worrying doesn’t affect anything in the material world, so it doesn’t help for me to do it. I still feel crappy but at least I know it’s not as crappy as it could be.   Oh and gross!  He also scheduled me for a colonoscopy ewwwwww.   I will get that at the end of this month but I won’t be happy about it!  (Don’t worry, I am NOT going to blog about it!)

Tell you what, though, I am going to have it done without anesthesia, as I am afraid it won’t play nice with the pain meds I already take on a daily basis (if anyone would like to share if anesthesia is really warranted for this procedure, feel free)….which brings me to my main topic for today…

…pain medication and the controversies surrounding opiates and pain management.  Medscape reports that a doctor (yes, just one) has come out with a statement on opiates for patients suffering from non-cancer pain (“New AAN Position Statement on Opioids for Noncancer Pain”, Medscape, 9/29/2014). Oddly, this is taken to be a policy statement from the entire American Academy of Neurology, even though there are no other authors or even other doctors who signed it in agreement.

This doctor, Gary Franklin, in my opinion, hasn’t seemed to have thought this out well enough, as he cites some statistics but comes up with some pretty weird (to me) interpretations of them.  He starts out by saying (about the use of opiates for pain):

“The evidence of harm is high, and the effectiveness is low,” Franklin told MedPage Today, calling attention to a graphic in the statement that shows the imbalance. “That is the whole story.”

Is it really the whole story?  As a former alcohol and drug counselor, I think it’s a bit more complex than that.  Let’s take Pennsylvania as an example.  According to The Philadelphia Inquirer (“Drug Overdose Deaths Up 7%, Far More in PA and NJ”, 8/20/2014) , we have moved from #14 in the USA for prescription overdose deaths to #7, in just a year.  Yikes!

And if you look at the details more closely, you see that 55% of the people who died or had a problem with opiates got the pills “from a friend or family member” ( “Results from the 2010 National Survey on Drug Use and Health: volume 1: summary of national findings”. Rockville, MD: Substance Abuse and Mental Health Services Administration, Office of Applied Studies; 2011).  Yikes, again!

People are having their scripts filled and then handing them over to their friends or families?  Um, I don’t believe so and I will tell you why in a minute.

But first I want to comment on these statistics: As you can see, the article about where people get their pain pills from is from 2010, and it is cited in a CDC report from 2011 (“Policy Impact: Prescription Painkiller Overdoses”).  At the top of this article it states that

“This web page is provided for reference purposes only. It was current when produced, but the most current data can be found on the Drug Overdose Fact Sheet.”

It should be noted, however, that even this information is not current.  If you follow the links, you find that, ultimately, this too is from 2011 (“Prescription Drug Overdose in the United States: Fact Sheet“) – oh, the article itself is dated July 2014, but the statistics cited/linked to are from 2011.

I don’t know what to make of it.  I can understand the spin that anti-pain medication folks want to put on the (non)issue, but I have always had the utmost confidence in the CDC to get their facts straight.  And they did, they are just not current.  I can only imagine that this is due to bureaucracy.

So suddenly there is this big brouhaha about an epidemic of painkiller abuse and overdose deaths.  As I continue my search for what’s behind this, I will get back to you on what’s driving this glut of “scare porn”.

But one thing that struck me is that NO ONE who quoted these stats in the various articles I read in order for me to cite them (thanks to a friend/mentor who suggested I do so) made any mention of what year the stats were from that they were quoting.  That would cut down on the hysteria, I suppose.

Then there is the attempt to link this to heroin overdoses because, as quoted in a Medscape article dated 10/3/2014 (“Opioid, Heroin Deaths Continue to Climb, CDC Says” ), Leonard Paulozzi, MD, MPH, a physician and researcher with the CDC in Atlanta, said

“…about 75% of heroin users say they started out by using prescription opioids.”

Is it just me, or is anyone else reminded of the arguments against legalizing marijuana here?  “Heroin users say” is about the most preposterous start to a debate about prescription opiates I have ever heard.

I take back what I wrote earlier about the CDC – my confidence in them is getting lower by the minute.  How many heroin users smoke weed?  Anecdotally, I can tell you that at every place I worked at as a d&a counselor, most – if not all – addicts routinely “tested hot” (tested positive) for that.

So would’ve the counselors, by the way, had the company tested them too!

There is no relationship between pot use and heroin use, any more than there is, say, between eating potato chips (which most of us do) and heroin use.

Between eating potato chips and pot? Well of course, but it’s the pot causing the munchies, not the munchies causing the pot smoking. See how stats can be twisted to say anything you want?

How many users take benzodiazepines and muscle relaxers?  I will counter that with another question: how many people are familiar with the expression “holy trinity” as regards to addiction?  Holy trinity: opiate pain meds, benzodiazepines, and muscle relaxers.  Get you high as a kite and then often kill you.  I guess those drugs are next in the line of fire.

Are we going to make those difficult to get, too?

Oh! How many heroin users smoked cigarettes before they tried heroin?  Smoking is way down in PA (“Current Cigarette Smoking Among Adults – United States, 2005-2012″ by the CDC ) but, according to sources already cited here, heroin use is not, so…

And what about beer?  Come on, people, let’s use some common sense here.  Many (most, in my opinion just from work/life experience) people who use benzodiazepines, muscle relaxers, smoke cigarettes, drink beer, smoke pot, do NOT then go on to use heroin.

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