In which I return from a LONG hiatus to complain about the election here, so that I don't set my FB feed on fire

Let's talk about the election.  Actually, let's not: I really, really don't want to, but I also literally can't think about anything else for any sustained period of time? I do not know what to do about it, so writing seems like my best bet.  Here's what I wrote to the Fishy today, re: the election.

 Thanks so much; it is ridiculously anxiety-making around here right now, for sure. I'm trying to keep it together, but it is so nice to know that other countries see how completely absurd this whole thing is, and are hoping for the best. I've done my part already, so now I just have to wait and hope that things aren't really as bad as they seem. Deep breaths!  I hope you are doing really well... in all honesty, it's probably my turn for the long email, but since I'm relying on my phone for everything since my computer finally gave up the ghost a few months ago, emails are more difficult than I'd like. (I am not nearly as efficient at thumb typing as I am at regular typing.).  (That is in no way relevant to this post, but I did want you to know why I'm not posting all that much: Phone typing is NOT good for blog production.)

Anyways, huge hugs, and a big thank you for thinking of me. This election is definitely the most anxiety producing one I've ever been through, and that takes into account that most of the time Obama was running the first time I was sure he was going to be assassinated before he could ever be inaugurated, so that tells you how bad it truly is. When a guy who believes in eugenics is one vote away from being the leader of your country- whether or not you are one of the ones whose genes are obviously inferior- I think terrified is the correct response. Now I just have to deep breathe my way through a day that most people agree is going to go the right way, and hope that nobody on our side got complacent and stayed home. Love you! Talk soon!

And I'm having discussions with NephTwo (this is the last presidential election he won't be eligible to vote in, which is blowing my mind) about Bush V Kerry - and how the fact that he got reelected has led me to this point of election anxiety, because I can't trust my fellow citizens to do what's right for the majority of us, the minorities of us, or even individual us-es.  I was 100% certain that Bush would not be reelected, but I had apparently living in some sort of Liberal Utopian Echo-chamber, where I just wasn't hearing the people who thought he was doing a good job? and deserved another term? Because all of the sudden, there we were, in Bush, Term Two.  I still have questions about that, to be honest: I have no idea how that freaking happened.  I went and looked it up, because I could not remember how close it was. 50/48 - that's it... two percentage points (and I don't even think two whole percentage points), and the balance of the world tips. 

Our world has been balanced on chads, on presidential pamphlets, on the media's portrayal of a certain candidates foibles or strengths (who you "want to have a beer with" vs who gets Swiftboated, who can "see Russia from their house" vs who's "never gonna be president now", for example), on demagogues and Supreme Court Justices alike. So, yeah, you'll have to excuse me being a little bit nervous about the fact that a person who does not believe that people like me should exist; who does not believe that - or act like - women are equal to men; who can criticize and castigate an entire race, an entire religion, and entire countries and still think that that has no impact on the greater world around him; who does not believe in equal rights for all people, should be so close to the ultimate position of power in our country. 

Even more bitter is that all the things that I believe should have disqualified him from running, let alone serving, are things that SOMEONE in my country is voting for him because of.  There is someone out there right now who thinks that he's got the right approach to Muslims, and that person isn't going away tomorrow, like Trump hopefully will. There is someone out there voting for him, and they're not bothered by the allegations of rape and sexual assault that Trump is facing. Who doesn't mind the way he's talked to Gold Star families, or the way he disrespects veterans. There is someone out there who thinks "Nuke the shit out of them" is valid foreign policy.  Who thinks "illegals" are group of subhumans, and that they don't deserve to live in the same space as the rest of us.  Who believes that 'Obamacare' is the devil, and doesn't care that it has saved my life - or the lives of hundreds of thousands of others.

And those people are all voting (as they should, although I could wish that they just haven't got the time for it today, right? That's not wishing them ill, so much as wishing them busy, which seems acceptable), and all of those people WILL STILL EXIST come tomorrow morning.  All of those people will still be our country-mates come the day after the election, and that's worrisome to me, because some of those people don't think I should exist, that I do not deserve equal rights, or the support of my government in the form of health care or civil rights.  (For multiple reasons, thank you intersectionality!)

There is some real looking hard at yourselves and your choices that Americans are going to need to do, post-election.

I get that my internet experience is tailored to exist as much in the Social Justice Warrior Bubble as possible, both by choice and by chance, but the facts of this election, and this electorate, are startling to me. (To be fair, I think most of us were actually shocked by Trump's accession, if you can take the fact that both liberal and republican media sources were playing the whole thing off as kind of a joke in the beginning as any kind of clue.) And it's not as if, existing in those spaces online, or as myself in public, I am unaware that all the -isms are alive and well in my country. (The ones I personally experience, and the ones I have witnessed happening to others, which I do understand are not the same thing at all.  I'm just saying, I was also not unaware they existed, just because I did not personally experience them.)
But that someone could rise to power, so quickly and with so little opposition, well, that was a shock to me. That's were my own experiences were definitely not enough, because for however much I've been treated badly by people with ableist attitudes or behaviors, I did not understand the extent to which there were still huge swaths of the country who not only pity people with disabilities, but don't think their lives should be lived. I literally could not believe that a eugenicist was being taken seriously in our election (Granted, he did not come out and SAY he was a Eugenicist, but I think if you look at the definition, and you look at what he believes, you can see how many others and I were able to draw that conclusion.) 

That is an extreme I was not prepared for, in this (or any) election.

I have been listening to other people's lived experiences - the fact that there are violent racists in America is not a surprise to me, for example - but I know that I was not prepared for how ardently and publicly people proclaim things that are overtly racist (or sexist, or homophobic, or Islamophobic, or ableist,), and still don't think that they themselves are racist (et al) .  That they can support a bigot without believing themselves to be bigoted is ... a cognitive dissonance I did not expect, and can not comprehend.  I also have not found more than one or two Trump supporters who can actually give me a reasoned support statement for Trump that do not mention Clinton at all - I get being anti-candidate, because I'm pretty sure I'd vote Garden Hose over Trump, but if you cannot find something in your candidate to support, that's also a problem (Garden Hose: putting out emergency fires since forever. Also, helps your plants grow which is two whole positive things more than I can name about Trump, for example.)

Nor was I prepared for the ways in which this election, and who people support (and how they support them) would impact my personal feelings about people in my life.  It's like Melissa McEwan's Terrible Bargain come to life, this whole thing.

There are people in my life that I depend on, because I have to, whom I no longer can look at as trustworthy, because they didn't see the "big deal" about Trump saying he could sexually assault women and get away with it because he's rich.  There are men that I have befriended and trusted that I now have to seriously reconsider spending time with, because they assured me that it was, in fact, "locker room talk", and not aggressive misogyny.  I know of more than one married couple who are having some really devastatingly difficult conversations now, because they are seeing each other differently in light of their reactions to what has gone on during this cycle.  I've been unfriended myself, because I couldn't refrain from calling out bigotry where I saw it.

 And even though I'm most likely better off, it stung, because I thought I knew that person enough to say "Hey: Not cool. Repeating racist things makes you seem racist, I hope you know." (I am including the word 'seem' here even though I think the correct definition would be to exclude it: repeating racist things makes you racist, if you're supporting them. But I was A LOT more circumspect in my actual FB comment, so know that even this would have been seen as a killer blow to our 'friendship.' )

And I've tried to keep my personal Facebook feed as apolitical as possible (which is not to say apolitical, bc that's impossible for me), and had more than one truly frightening conversation with loved ones about race, class, the economy, misogyny (internalized and externalized), and power than I could ever have imagined having.  Sure, some have been positive, but for the most part, I find relationships are scarred by our interactions over this election - where I am mostly seen as a 'lefty loonie' in our family NORMALLY, now I have been placed in full on 'raving banshee' position, even though I have censored myself  8 times out of 10.

It's not something I'm likely to shrug off either - I will remember every "Oh, aren't you naive" and "that's not why I'm voting for him, but it's also not enough of a reason not to vote for him," I've encountered, you can be sure of that. 

In closing, please sweet baby jesus that I don't actually believe in, could this day end the way it needs to? With hope and community and optimism for our future? With the first woman president of our country, on the cusp of bringing a lot of people together to get shit done? Because I would like that a whole lot. 

On another note, though, my NaNoWriMo writing is going great guys, because I am writing about so many explosions! And history making changes! And life altering political policies! And complete dystopias, because I can't see how else this can end! (I predict M A N Y novels that come out of this NaNoWriMo are going to be Hunger Games-esque, because how could they not be?)

Gobama!

(and deep breath out) 

Definitely not anxious

... but have the election results been posted yet? 

Seriously avoiding most media at this point (have checked the Twitter a few times), because I just can't handle it.  Either we're going Forward or we're going back to the (18)40's.  And, at this point, I can't do anything about it at all.  So, back to NaNo and boosting my word count (up near 8000 words, which is a little shy of where I should be, but still: rocks and kicks ass, so I don't care).  See you on the flip side, readers.   

Choosing your friends wisely

 Here's yet another letter I've written lately, this one to Carbonite CEO David Friend, re: Limbaugh's ridiculous show (how is that still on the air?) 

Mr Friend -

  You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him.  I hope that this e-mail, although serious in tone, will be a welcome one.  I am a loyal Carbonite customer for nearly three years now, and I love your product & services.  I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer.  I also am quite glad to be able to support a local company.*  I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc.  By that means, and my own experiences, I have learned a number of positive things regarding your company and your services.  However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show. 

 Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air.  What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well.  I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant.  There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee).  There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it."  Are those the words of a man you want representing your company?

I really hope not.

I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company.  I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc. 

I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product.  But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you.  One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company.  I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.

Sincerely,

NTE

*Carbonite is, at least in part, Massachusetts-based.

Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen &  that Rush "overstepped any reasonable bounds of decency".  Win!

"If you don’t stick to your values when they’re being tested, they’re not values—they’re hobbies."*

Part two of yesterday's topic, politics could lend itself to a long-ish rant or two. But I'm exhausted: I came home today, after two and a half months with Grandmother at her house, and I'm relieved, happy, sad, exhausted, and discombobulated. Mostly discombobulated, as a lot of things are different here, and there's just ... stuff to deal with. Unwilling to deal with stuff, I'm instead trying to figure out how to put myself to bed twelve hours earlier than normal (and hope that it sticks).

So here's some political icons I've got saved on my computer, just because A) some of them are really funny; B) they fit the bill and C) I am too tired to think of smart things, like sentences.

via Lady Kara

via I'm voting Tea Party

via Maddow Show: The National Debt



Where would you rather live? via Lady Kara




*Jon Stewart

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

"No government has the right to tell its citizens when or whom to love. The only queer people are those who don't love anybody"*

I'm trying to come up with a good answer for day 17, so we're going to come back to that.

Instead: Day 18: My views on gay marriage, which are much easier to clarify.

My views on gay marriage are that there should be no such thing.

Not because I have a problem with same-sex couples getting married, but because I have a problem with people trying to separate out one type of marriage from any other. There should just be marriage Period. The End.

You are straight and you want to get married? Go ahead. You're gay and you want to get married? Feel free. And so long as you are two consenting adult human beings (which goes without saying unless you are one of those people who think that same-sex marriage will lead to people marrying their coyote friends or something, in which case, why are you reading my blog?) then everybody else should just shut the hell up and mind their own business.

Also? I live in Massachusetts, and I'd be happy if we changed our state motto to "First in the country to give all loving couples their unalienable rights! Get on board America!" (Or something along those lines but much more witty.) I have no patience of bigotry of any kind, and institutionalized bigotry (I'm looking at you DADT!) should be immediately corrected and left to the history books where it belongs.


*Rita Mae Brown
Bonus: I found more than one good quote for this entry, so I'm including a couple, just because I can...

I'm a supporter of gay rights. And not a closet supporter either. From the time I was a kid, I have never been able to understand attacks upon the gay community. There are so many qualities that make up a human being... by the time I get through with all the things that I really admire about people, what they do with their private parts is probably so low on the list that it is irrelevant.

Paul Newman

People who can't think of anything else but whether the person you love is indented or convex should be doomed not to think of anything else but that, and so miss the other ninety-five percent of life.

Robert Towne

Everybody's journey is individual. If you fall in love with a boy, you fall in love with a boy. The fact that many Americans consider it a disease says more about them than it does about homosexuality.

James Baldwin

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

Recently, I received an advocacy alert from one of my various CFS/ME groups, concerning the possible inclusion of CFS in the newest version of the DSM. The DSM - Diagnostic and Statistical Manual of Mental Disorders - is the American Psychiatric Associations' guidebook when it comes to mental illnesses, and the idea that there would be a category under which CFS might (or could realistically) be grouped is terrifying. It's a huge step backwards in the fight for funding, understanding, treatment, and all of the other things patients with CFS often don't have the energy (or time, or resources) to continue to battle without end.

I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.

I'm writing to express my concern about the possible inclusion of Chronic Fatigue Syndrome as a "functional somatic syndrome", under the newly created category of Complex Somatic Symptom Disorder in the DSM-V.

First, I take issue with the vague and almost universally applicable criteria under which the CSSD could be diagnosed. Symptoms like
"A belief in the medical seriousness of their symptoms despite evidence to the contrary"; "Normal bodily symptoms are viewed as threatening and harmful"; "High level of health-related anxiety; "A tendency to assume the worst about their health (catastrophizing)"; &"Health concerns assume a central role in their lives." are so ambiguous as to be useless. Under this criteria, I would say that ANY chronic illness could be included as a somatic disorder. If you have heart disease, your "health concerns" will - if you intend to survive - most likely assume a "central role" in your life, and many previously "normal" symptoms could now be considered as potential threats. If you are diagnosed with cancer or HIV, I'm going to assume that a certain amount of "catastrophizing" would take place - there have been numerous books written about how a diagnosis of such an illness is not a death sentence: Would there be a need for those books if people didn't automatically assume that certain illnesses could mean the worst for them?

Creating this new category is to dismiss the very real worries and concerns of ANY patient, with ANY illness: It fails to take into account that, when confronted by an illness you cannot predict, you may sometimes become discouraged, fear the worst, or wonder if your newest ache or pain will be as devastating to your life as the previous one was. It takes what is human about a patient - the fact that they might make mistakes, or become anxious about something that is having an intense impact on their life - and turns it into something that is abnormal, something that should be seen as an illness. In so doing, you erase the humanity of all individuals with chronic illnesses.

If you fail to see that some of these behaviors - for example, having a high level of "health-related anxiety" - can, in fact, be positive coping mechanisms, you are invalidating the needs of a chronically ill patient. If a patient is proactive - if she sets a schedule for taking her meds, follows a nutritious diet, incorporates periods of rest and exercise as needed throughout the course of her day, & keeps up on the newest treatments and research regarding her disease, then yes: it is fair to say that "Health concerns are a central role in her life." However this is only to her benefit, and EXACTLY what doctors advise their chronically ill patients (and, with specific changes, their well patients) to do, no matter what their diagnosis might be. And yet, you plan to classify that as yet another symptom for a "disorder" that has no real medical definition. With "symptoms" so broadly and subjectively defined, the potential for misdiagnosis, and abuse towards patients whose illness are atypical, medically complicated, misunderstood, or rare is extremely high and frustratingly preventable...by simply excluding such a code, which would likely do more harm than good.

What other forms of harm, besides the very real danger of ignoring the physical deterioration of a patient due to misdiagnosis, might occur? Consider a recent study out of the Netherlands, which concluded that it is "unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as Cognitive Behavior Therapy and Graded Exercise Therapy", two of the most widely used therapies for ME/CFS in the UK, and both recommended treatments for various current forms of somatoform disorders, or the fact that most SSRIs (which are also considered applicable treatments for somatoform disorders), tend not to be effective in treating CFS, and carry the risks of many serious side effects.

Somatiziation is the physical expression of psychological symptoms, and for the APA to claim, as experts and medical authorities, and with no room left for doubt, that the symptoms of CFS begin as psychological is not only to contradict the World Health Organization (which classifies it as neurological in basis), but also the US Centers for Disease Control (which stated, in 2006, that "There were no other factors, psychological or biological, that held up under thorough analysis"). It ignores the fact that in the UK ME/CFS patients have been banned from donating blood for over 20 years, that they were recently prevented from doing so in Canada, and that they are actively discouraged from doing so in the US. It also does not reflect a complete understanding of most of the current scientific research including viral implications, numerous biomarker studies; studies with immune system findings, neurological findings, CNS findings, genetic findings; and the complexity and interconnectivity of a disease like CFS. And it ignores the voices of the many experts and medical organizations focused on CFS research, including, but not limited to: Drs. Bell & Cheney, Dr. Komaroff, The Whittemore Peterson Institute, Dr. Klimas, & many others, who continue to search for the cause, treatment, and possible cures for this horrible disease.

I fail to see why, when biological science is stumped (or, in the case of CFS, more likely just ridiculously underfunded), putting the blame in the heads of patients is considered an acceptable solution. To include a definition of CSSD that could be applied to conditions like Chronic Fatigue Syndrome or Fibromyalgia is to forget the long - and embarrassing history - of unjust accusations of patients - or patient's families - "creating" their own illnesses - In the not too distant past, mothers were blamed for Autism, Type A personalities were blamed for causing ulcers, and both Multiple Sclerosis and Epilepsy have long been tainted by the incorrect assumption that they were caused by patient behavior.

Also important to note is the disconnect between medical science's understanding of men's bodies (and, therefore, diseases that are more likely to strike men) vs medical science's understanding of women's bodies (and, therefore, diseases, like CFS and FM, that are disproportionately more likely to affect women). From the fact that the term "neurasthenia" (aka "the vapors") - a term which the DSM itself tossed out years ago - is still being used in the UK to label CFS patients, to the woefully inadequate funding and research into diseases that have high populations of female patients, and how this would only contribute to the misuse of a CSSD coding.

I wish to be clear; Of course, for any person, chronically ill or not, there can be physical effects of psychological stress - You have only to suffer through one tension headache or witness a child so nervous that he loses his breakfast to know that this is true. But to state categorically that all of the symptoms of CFS patients (which can include sore throats, chronic infections, post-exertional fatigue, abdominal pain, unrefreshing sleep, irregular heartbeat, vertigo, muscle and joint pain, mental confusion, tender lymph nodes, allergies, night sweats, hypersensitivity to light, sound, smells, heat or cold, abdominal pain, blood pressure problems, and many, many more) can - definitively - be attributed to psychological factors, is to propose and support a falsehood.

I'd also like to refer you to a recent "Submission Re: DSM-V and ME/CFS" compiled by Professor Malcom Hooper and Margaret Williams of the 25% ME group (submitted 3-20-10) for an enlightening discussion about who would benefit from the inclusion of CFS as a CSSD, and the conflicts of interest evident in the DSM-V Somatic Symptom Disorder Work Group. (This work also includes a good summary of why the criteria are "so wide & non-specific that they have little clinical utility,"which I have already discussed.)

In conclusion, I urge you to consider the consequences of such an inaccurate and regressive inclusion - the potential for misuse/abuse/overuse of a non-specific coding for millions of affected patients; years of unhelpful and potentially dangerous drugs and therapies for patients who go to their physicians looking for answers; further & inhumane setbacks in the search for the real illness that is affecting these individuals, as well as the research that is necessary to find a cause, treatment & cure; and putting the DSM-V on the wrong side of medicine (and eventually, history).

I appreciate you taking the time to read my thoughts and concerns, and hope that you will take them into consideration as you make your final recommendations.

Sincerely, etc etc.

You can find the full criteria Here, as well as a link to where you can submit your own comments.

Sitting around waiting for inspiration ain't really accomplishing much for me ~

It's been a long, long week.. everyday a new & surprisingly bad revelation, and for me - who was already worn out from this fantastic flare - it has been pretty hard just to drag myself through. Here's some of the highlights -

On Monday, Sister Ch developed a rash at work (again... this is like the 4th time in a row). Only this time, it was severe enough to get her to go to the ER... where she waited 4 hours to be told that she has some sort allergy. They gave her the name of an allergist and an Epi-pen. Of course, since she has no idea of what she's allergic to, it should be interesting to see how that works out.

On Tuesday, we discovered little bugs in our kitchen. They are not ants. They are not roaches, they are some sort of little beetle or something... and they like our windowsills. Oh, and also the cabinets.

On Wednesday, some of my Nana's test results came back and the news is not good. We don't know how not good yet, so I'm trying not to think of it just now... She's got an MRI scheduled for tomorrow morning, and then she's got to see an ENT for a biopsy.

Yesterday, there was no bad news. And we had Lil Girl, which was great. And she said SisterCh's name, which was adorable. And I breathed and took a shower, and waited for the doctor to call. He didn't, but that was O.K. cuz I didn't really want to talk to him.

And today? Well today was supposed to be a nice relaxing day for Mum & I, b/c Dad's on vacation starting tomorrow and 'vacation' for him in reality means 'more opportunities for driving us crazy.' Like making homemade raviolis, which he wants to do, you know... for Thanksgiving. (????) But instead of that, my Mum got a call from Nana saying my aunt had passed out at work and was on her way to the ER in an ambulance. My aunt has been sick for a while now, but - because she refuses to go to the doctor - nobody knows what's wrong with her. She just lost a lot of weight (and she had little to spare to begin with), her skin got all crepe-y and off colored, and she had trouble eating. Turns out she pulled a little me - the whole low-blood pressure = syncope number - and hit her head on the way down. (Boy, that hurts, let me tell you.) A few stitches, nothing big. But now that they've got her, they're trying to figure out the why of it: she's anemic and severely dehydrated, and, when my Mum finally came home right about 8 hours after she left, she told me they were thinking there was a problem with her liver.
(This is where I mention that alcoholism runs in both sides of my family - largely unacknowledged, btw. She wasn't drinking this morning, certainly, but I doubt that her drinking isn't in someway connected to her problems.) But she was awake, alert and cranky by the end of the day.

So - little annoyances, bigger issues, health worries right and left, a not-so-major flare, and Thanksgiving looming... it was, in fact, a particularly un-fabulous week. I'm pretending that a new week starts tomorrow, on Saturday. Because I need it to. Youngest Nephew is coming for his regularly scheduled sleepover, and I'm determined to have a better day.

I hope you all are having nice, normal, calm, peaceful weeks. Get ready to think of all the things you are thankful for: they've been uppermost in my mind just lately, I'll tell you that.

I specifically waited until after The Office...

so that I could pepper this link with a fabulous quotes from this week's episode.


Here's is Dwight (Oh, boy was Dwight awesome in this episode): I keep various weaponry strategically placed around the office. ... People say "Oh, it's dangerous to keep weapons in the home or the workplace." Well I say it's better to be hurt by someone you know accidentally, than by a stranger on purpose.

I've never actually had a full-time, paying job. When I was a teenager, I babysat pretty regularly & subbed as the secretary at the local rectory. For two years before I got sick, I'd been an assistant dance teacher at the dancing school I took lessons at, but it was paid in kind - teaching classes to pay for my classes & a discount on the costumes. (Did I ever mention that? That I was a dancer before I got sick? I can't remember now...) When I got sick, I was 15 - about 9 months shy of being old enough to get my work papers (without parental permission and a whole lotta red tape). It worked for us. Anyways...

Then I got sick, and I went to school ~ still took some babysitting jobs here and there, but that was all I could manage. Then I did my placements and internships and semesters as a student teacher, but none of those are paid positions.

So I've never been in a union. What I know about unions comes from repeated viewings of Newsies and the scattering of information to be found in economics classes, history classes, & sociology classes about the intersections of poverty and prosperity. I realize I don't know too much about this strike beyond it's ability to impact me, as a television viewer (No Daily Show! No Jon Stewart! No Steven Colbert! How will I liiiiiive??)

But it seems to me that the contracts of workers should have to keep up with the development of newer technologies in that particular field. I don't find it absurd that they're asking to be included on ALL of the profits from their work... in fact, it makes no sense to me that there's even a debate about it. Aside from greed (or other excuses that seem to boil down to greed), I haven't heard any justification of the opposition's position to this increase.

And that's why I'm so glad that Steve Carell said he wouldn't cross the picket line, even if it means that there won't be any new episodes of the Office to watch for a while... Because he's standing up for the people on his team, doing what seems right to him. As if I didn't already love him enough.

If you've spent some time in the blogosphere lately, I'm assuming that you've heard about the Edwards blogger brouha-ha. If you haven't click over here:

But here's the thing: if you haven't spent time in the blogosphere, I doubt that you've heard anything about it.

I'll grant you that I am nowhere near a news junkie - We've talked before about how my... oversensitivity to other people's problems means that I tend to boycott the news as much as possible. - But, I usually do hear something about the major things that are going on. (I'm not counting Anna Nicole, which, by all that is holy is a personal tragedy and NOT a global crisis!) When you're television is on for as many hours of the day as mine is, you can't help but hear bits and pieces of what's on the news. There's teasers during commercials, comedians & talk shows, what's showing on the news while I'm waiting for the weather to come on. For starters. So, I do tend to hear things, and not a single mention of this situation.


Given the - in my opinion, righteous - outrage of bloggers, the tone & frequency of posts, the seriousness of this issue, I'd have thought it would be mentioned... somewhere. And that's just sketchy.