Sunday, April 25, 2010

Mark your calendars -

Next Saturday is the 5th Annual Blogging Against Disablism Day, hosted by Diary of a Goldfish. You can head over there to sign up, should you wish to participate... it's an all access blog event, so as long as you can think of something to write about abelism (which is the US preferred term, as opposed to disablism), you are more than welcome. Allies: all aboard!

I've participated since for the past 3 years (here are my 2007, 2008, & 2009 posts, if you're interested), and am always impressed by the quantity and quality of posts that get included. (Don't worry if it takes you a week to get through them all... trust me: they're worth it.)

The best news is that since BADD also happens to be falling on Free Comic Book Day, I've decided to finish my damn Oracle post from waaaaaaaaaaaay back in October! Because, honestly, it's been sitting in the draft file long enough, and I hope it says some pretty interesting things about ableism, sexism and how ingrained they are in our popular culture. (Of course, it may also suck, and many people will read it and say "huh?" but I'm hoping not.) Either way, I'm motivated to finish editing it and put it out there.

If you can think of something to say about abelism ... People using the word "retarded" really starting to piss you off? Notice someone totally disregarding an individual because of their disability and wish you had known what to say? Wonder if there even are any people with disabilities in your community (Spoiler Alert: There are), because you hardly ever see any? All of these things would be appropriate to talk about next Saturday! The more perspectives we get, the better off we all are.

Blogging Against Disablism Day, May 1st 2010

Friday, April 23, 2010

...and then I disappeared for a little bit

Just plum wore-out, folks. Kiddos are on vacation (we had all four of them, plus SisterS at one point this week), my sinuses are not, and after two parties last weekend (one over an hour's drive away), I am feeling horrid. Just worn out. And Sore. (That should probably be in all caps, and bold, and italics, and underlined, and rainbow colored, just so it has enough emphasis.)

Good news is I'm typing this on my brand new Dell 'puter, which seems to like me a lot, which is nice. (Once I decided I couldn't afford the Mac, it made my decision/life a lot easier... and now it's so purty that how can I complain?)

Bad news is I can't think of anything to say right now (besides ouch), and so I'm just letting you all know I didn't disappear.

Am still alive. Just resting. (Or attempting to, anyways.)

Friday, April 16, 2010

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 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.

Tuesday, April 13, 2010

I did mention, right,

that I hate doctors?

So, you may remember that I was all on board train "face surgery" as much as any person could be anyways, when last we discussed it. Well, today I had some (unrelated) blood tests, and my liver came back SNAFU. My liver is like that - sometimes, it is fine and dandy, other times it grows things named after cartoon characters from the 1980s (Looking back, I realize that I was not actually writing this blog way back when I developed my hemangioma, which is pronounced exactly as it is spelled: He-Man-Ge-Oma, but that's what I am referring to). It has been labeled fatty (which hurt both our feelings), been ruled out as a donor organ, put on (and taken off of) various medications, and sends sudden, terrifyingly high bad cholesterol numbers to scare lab techs into making the doctor call me back on the very same day. Of course, the fact that those cholesterol numbers also drop dramatically every other time doesn't seem to bother them, but for right now, I'm supposed to be impressed that they are "startlingly high" for someone so young. (I'm not impressed, or bothered, and will just wait till next time before I panic, thank you very much.)

But aside from the cholesterol, my liver enzymes are elevated, which means ... what? Something. Maybe. Nothing? They are Not Sure. They want More Tests. They are Reviewing My Records. - Or, they will be doing all of that, they promise, when they return to the office in a Week and a Half. :sigh:

Which means the sinus surgery may have to be postponed, which I am not pleased about because, well, now that I am on board the train, I would like it to leave as soon as possible, so that I can get off of it as soon as possible. I do not like waiting. I do not like new problems to pop-up when I do not have the energy to deal with them. I do not need some new Skeletor to face, and I'd rather not have to deal with a recurrence of his arch-enemy either (Because, although all that that required was monitoring, liver ultrasounds - any ultrasounds - and me of the FM pain/tender body parts, do not get along well).

I'm just having the kind of the week where things seem to be crumbling/sucking no matter what I do... things that start off with the best of intentions are suddenly horrible and poisonous, and I have no idea where they went wrong or how to fix them.

So when the doctor - my primary care, whom I do not have much faith in at all - called and said "This is a problem. But I'm not going to be here to help you figure it out for two weeks", I wanted to dissolve into a puddle. I mean, I know, in my head, that there are things I can do - like calling the surgeon or Zack in that time, just so I know what their take on the whole thing is - but right now, all I want is for all the complications to Go Away.

Or, maybe I could go away: Where is Swift Wind when you need herhim?
(Did you know he was a he? I didn't.)

Friday, April 09, 2010

One of my favorite things

about Lil Girl is her singing. She's a singing fanatic. Picture an almost four year old who knows all the words to Bad Romance or Live Like We're Dying, and you've got a pretty good take on what kind of singing happens all the time around here. (We'll just pretend I don't have my own, hyper-judgemental issues about letting a four-year-old listen to Lady Gaga and move right along...)If there's anything more adorable than that little curly head bobbing back and forth, and little fingers twirling her Mr. Microphone as she belts out "You belong with MEEEEEEEEEEEEEEEEEEEEEEEEE", with then I don't even want to know about. (Said in my best Mrs. Landingham voice.)

But there are a couple of complications - The fist being that she's infinitely more up to date in her song choices than I am... I listen to the radio with the specific goal of catching up on current songs so that I know what's coming out of her mouth half the time. (Although I also do my best to catch her up on a lot of music she wouldn't be otherwise exposed to - if you're 4 and not singing Disney songs, then I am sad for you - so there's definitely some overlap.)

And then there's the songs that I have no clue about - the ones she asks me to finish for her "Sad and on the dancefloor he left me there.... What's next, Auntie?" Um... I have no clue? I have never heard this song before. Or when there's some dance moves that she thinks I should know that go along with the song "When I say "Hope it brings you hell" you're supposed to do count like this:" she moves her fingers very slowly down from 5 to 0. O...k: why am I doing that again? "It's the way the song GOES AUNTIE!" Alrighty then, what do I know.

We've also made up our own routines: as a former dance teacher, it fills me with glee to see her hopping and toe pointing her way through a song. Although her favorite is just a Michael Buble cover of the song Hold On during which I have to try to sneak up on her and hold on to her every time he sings the words "Hold On". He sings those words a lot in that song. By the end, I am just pulling on her toe and trying to catch that, since the little bugger has a LOT more energy than her Auntie NTE.

Complicating the whole thing is the fact that she's not always clear on what the song is actually saying, but this is, by far, the best part of our singalongs.

A recent sampling of some slightly confused lyrics -

(In the interest of full disclosure, I will freely admit that, until I was a teenager, I thought the words to "Addicted to Love" ("Might as well face it... you're addicted to love.") were actually "Hyena's little faces you're addicted to love." I did not know why there would hyenas and their faces in the song, but it never occurred to me that I might be mishearing the lyrics until someone else sang the song with me and laughed their ass off when I sang the wrong words. Ah, 12 year-old girlfriends.)

From Eeeny Meeny Miney Moe, the perpetual help-me-choose song preferred by children of all ages: "Catch a tiger by the toe, if he liars" or, alternately, "if he lawyers let him go." True: If the tiger lawyers up, you've got to let him go - you aren't going to get anything out of him. Actual lyric: Hollers. Not a word in her vocabulary, I'm afraid.

From Hey, Soul Sister by Train: "Hey Soul Sister, ain't that Mister Licker on the radio, stereo, the way you move ain't fair you know." Obviously the correct lyrics of "Mister, Mister" would be a bit before her time, (as is stereo, come to think of it) so that's fine, but Mister Licker? I don't even want to know.

My current favorite is from the Lady Antebellum song, Need You Now which says that "I'm a little drunk, and I need you now". Her version: "It's a quarter after one and I'm a little trunk and I need you now." I actually giggled at this one, picturing a little suitcase siting out, abandoned, waiting for someone to pick it up. Also wonderful is her timing: the part where the sing "for me it happens all the time" has a little beat after it before the song starts up again, and she bops her head every. single. time.

Also heart tugging are the phrasings that she tangles up - adorably, IMO - so that "Romeo take me somewhere we can be alone" turns into "Romeo, take me, somewhere can we be alone."

These are like the last of her baby mispronunciations ("Yittle" has been fazed out over the course of the last 6 months or so, and that was one of my favorites), little blips in her road to growing up that I want to be able remember. The two of us, sitting on the floor in the dining room, her belting out a song about sad and lonely trunks, and me giggling along.

Friday, April 02, 2010

And then, 3:30 am rolled around

and I nearly burst into tears because the damn tape player (which is from 1993, you guys!) ate my HP tape, or something. It is playing, but silently. WTH?

And it takes me FORTY FIVE MINUTES to figure out that Lil Girl had turned the volume off after her song earlier, and that is why I can't hear anything.

Moment of accomplishment? Totally in the past.

Thursday, April 01, 2010

Giving myself a sticker

It's been a long week. I don't actually know why it's been a long week (and I am getting so sick of saying "I don't know why", since it's how I feel about everything lately), but I am just plum worn down.

Some of it is physical, I'm sure... I'm sifting my way through a particularly bad cycle in my FM pain, due, in part at least, to the unending wetness and yo-yo like weather we've been experiencing here in Massachusetts (Wettest. March. Ever. Literally.).

Some of it's the exhaustion of yet another horrid and unexplainable stretch of total insomnia - as compared to the light-dosing/completely unrefreshing sleep I've been living off of for the past 10 years or so, bouts of total insomnia = days with no sleep at all. At ALL. Nights of repeatedly listening to the Harry Potter books on raggedy cassette tapes (Shut up: they were free), and getting the lovely voice of Jim Dale stuck in my head. (To the point that I sometimes imagine him doing a lilting British narration of my life, and somehow managing to make it seem interesting. "The bread was moldy, and, with a shiver and averted eyes, NTE briskly opened the cupboard and tossed it into the bin. 'No luck on sandwiches today, lovey,' she called, 'How about a nice crock of soup instead?'")

Some of it's emotional - trying to get used to the idea of my Face Surgery (that's what we're calling it here... capital letters required); still being computer-less; having a to-do list that's about 3/4 of a mile long; knowing that 5 of my closest college friends & a cousin-in-law are all pregnant right now, and I am not; failing yet another drug trial, the one that Zack was convinced was going to work; knowing we've been living here for a year (well, not me, I'm about 4 months behind because of My Summer With Grandmother {again, caps required}, but we've been out of the old house for a year anyways), and I am still about 1/5 unpacked: My clothes are in drawers and my books are on the shelves, everything else, all 30 years of my stuff, are still stored in boxes, waiting for me to shuffle through them.

Let's just say that I'm feeling a little behind the 8-ball lately, like I just can't catch up, and am barely able to do anything right.

But today, today I struck gold.

Today I had a moment so right that I wanted to sing, dance, clap, cheer, and give myself a sticker.

If you've been reading here for any length of time, you probably get the gist that Lil Girl is a wonderful, crafty, extremely bright, and terribly stubborn child. Self-willed will most likely be her major in college, and she will graduate with honors with that degree, even though the college doesn't offer "self-determination" as a legitimate option for degrees, because she will just wear down the administrators until they give it to her.

Stubborn as the day is long, that's our Lil Girl. (She also comes by it naturally, as our family tends to run a little towards the mule-side, but that's another post for another day.)

For today's post, you should also know that Lil Girl is sick. She's not a miserable kind of sick, but she's got an ear infection, and a cough, and she's been battling this off and on for at least 5 months. (I'm hoping her immune system is just reacting to her new school environment, and that she inherited her mama's genes there, because ours run to crappy.)

Anyways, to finish setting the scene: Sick, Stubborn Lil Girl. Who doesn't like to be told what to eat or drink on her best day. And now has to take a Rx medicine twice a day. To show how well this process has been going, I offer two examples:

Example A: My brother calls me two nights ago, Lil Girl is wailing in the background, and he says that after 25 minutes of fighting with her to take the medicine, (which included him trying to force her to take it physically), he is giving up. I try - completely in vain - to wave some sort of long-distance magic wand to help everybody calm down, but she winds up going to bed exhausted, crying, and medicine-less, and he very curtly tells me he's "done." I spent a good three hours fuming, post-phone call, wondering what the hell I was supposed to have been able to do from so far away.

Example B: When she arrived at our house this morning, Mum asked her if she had gel in her hair, because it was kind of crunchy (and because, if her mom is doing her hair while she gets ready for work, sometime Lil Girl insists on the full treatment as well). Her mother states that no, it's actually medicine that Lil Girl spit out this morning, but there was no time left to wash her hair.

So, if I tell you that Lil Girl took her medicine for me tonight, before she went home, with only a piece of hard candy (for post-medicine taste changing) and a one song of her choice soundtrack as encouragement, you will, perhaps understand why I wanted to commemorate the occasion with a post.

It's not such a huge thing, really, and it probably had a lot more to do with her than with me (if she had been in a different mood, I have no doubt there would have been a Very different outcome), but there was no fighting, no cajoling, & no controlling (on my part); no tears, no whining, & no feeling powerless (on hers). It was just a simple "This is what we have to do," and then it was done.

And, just for a moment, I felt as if I'd saved the world. Just because one Lil Girl swallowed two teaspoons of medicine without a fuss, I managed to feel just a second's worth of that "I can actually do this" feeling.

And I'll take every second's worth of that that I can get, wherever it comes from.