Nowhere exciting, unfortunately.
Just feeling a little bit more rundown than usual: Allergies and a spring cold - along with a birthday party, a baby shower, a double christening and a wedding shower - have left me feeling the full weight of the Fatigue part of Chronic Fatigue Syndrome. I'm still waiting to hear if my surgery is on or off - if it's on, it's scheduled for Next Friday, which - how the damn hell did the end of May get here so fast? I'm loving my new computer, which is quick and not-complaining and purple-ish and a little heavy but I am getting used to it. I am mostly doing mindless things, and have so many unread feeds in my Google Reader that I almost don't want to turn it on (and some days, I just don't). There is very little exciting news here - SisterCh moved in with her fiance, leaving me as the only child still at home, and that is not the most awesome feeling, let me tell you. I am weeks behind on phone calls, because every time I look at the phone I get a feeling of just "ugh" and then I roll over and read a book because I don't have to think of what to say next. I am very sorry if you are reading this and are one of those people I haven't called... I'm getting there, I promise. Poor BestFriend/College Roommate and I haven't seen each other since November, I think, and I keep seeing her - and her kids - Christmas presents in the corner and cringing, because it's mostly my fault that we haven't met up, and yet I just don't have enough umph to say "Come on over!"
And this post is very whiny, which I do not enjoy, so instead of keeping on in that vein, I'm going to say that Lil Girl told me the other day that I am "Beauteous", and I wanted to give her a pony. And that my cousin's twins (now 2 and almost a half years old) finally came over for the first time a few weeks ago, and it was amazing to see them running around (one with his feeding tube and all, the other avoiding the tube expertly), laughing, and seeing their mom laugh did me some good as well. And, finally, No Longer Youngest Nephew pitched in his first Little League game this week, and retired his side with no hits!
I'll be back soon, I hope: Just gotta think of something to say.
Wednesday, May 12, 2010
Saturday, May 01, 2010
BADD 2010
In honor of Blogging Against Disabilism Day, here is my (long-promised and hopefully coherent) post on Oracle, superheroine extraordinaire:
For whatever reason, I was juiced about Halloween this past year: maybe it was the idea that we might, in our new house, have more than three trick-or-treaters, or maybe it was that I'd been feeling like crap and was looking for a reason to be excited - who knows?
Whatever the reason, I decided at the last minute to see if I could throw something together. And so, that Saturday morning, I was searching online with a (pretty great if I do say so myself) idea in mind: Oracle. DC Super heroine, former Batgirl, and wheelchair user extraordinaire. The best part is that since she's a behind the scenes kind of girl - at her most basic level, she's a computer genius who supplies Batman (and numerous other heroes/heroines) with the intelligence necessary to fight crime - she can wear whatever the hell she wants. Jeans, mostly. Sweatpants, sometimes. Excellent: I can handle sweatpants! Accessories? Laptop computer: Check. Bluetooth device: Check. Superintelligence: Easily faked. (Ok, yes she has red hair, but it was dark. And trick-or-treaters are little, so I decide to just pretend there.) So, although I did wish I had a shirt with a bat insignia on it, I figured I was set. What I didn't expect, while searching to make sure my mental picture of Oracle matched up with the reality, was how much abilism I would have to wade through in relation to the character of Oracle herself.
Now, before I get any further, let me just state, for the record, that I am absolutely a newcomer to the comic book world, and I have absolutely no experience with the fandom, the world building, the story arcs: I don't know if Oracle ever had to fight the Riddler, or if she battled Catwoman, or if, as a comment I wandered across suggested, she and Professor Xavier are getting it on in private - because people with disabilities only date other people with disabilities, don't ya know - : For the purposes of this discussion, I will gladly cede the point that I am NOT a comic book genius, and that there's a lot about the DC Universe that I don't know or understand. I am not even going to consider myself worthy of writing a critique of the character, or comic books in general, in regards to different forms of discrimination - the majority of this post is going to instead focus on the ablism inherent in the online discussions of Oracle - that is, the arguments over her fitness as a superheroine, her perceived uselessness when being "confined to a wheelchair", and the unapologetic ablist terminology & attitudes that were displayed in these various discussions.
To start with, there's a lot of argument about whether or not Barbara Gordon is a better character now (as Oracle) than she was as Batgirl, and I'm sure that's a valid discussion to have - which incarnation of a character is the best, why is it the best, etc. What I think are distinctly less valid are observations like -
No: People with disabilities are not better because they're disabled. They're also not worse, either, and that certainly seems to be the implication here - Oracle is not as good as Batgirl, not as worthwhile, not as valuable. Her intellectual skills - genius hacker and supplier of crucial information - are not on par with the kicking and swooping and physicality that she exhibited as Batgirl. She "saved" Batman when she was Batgirl, but that information she provides is apparently not life saving enough. (Although I seem to remember at least one occassion that this was exactly the case.) The alliance building she did with the Justice League of America, the founding of the Birds of Prey (an all female superhero team), her photographic memory, and the fact that she remains a master of numerous martial arts (even though she is "confined" to her wheelchair) is just not 'life saving' enough?
Somebody probably should have told her she was just wasting everybody's time and getting in the way.
Then you can compare that attitude with this one -
wikipedia
And here we get the ideal SuperCrip - able to "get past her bitterness" over being viciously attacked and to overcome the challenges that being "wheelchair bound" must present. But ablisim goes both ways: When you are attributing characteristics to a group of people because of their disabilities - whether those characteristics are negative or positive - you are using stereotypes and ignoring their real value as people. African Americans are not all good at basketball, women are not all bad drivers, and people with disabilities are not pure or without moral imperfections. See this excellent post for all the reasons why being a Supercrip is not only unrealistic, but damaging as well. (And yes, I don't need you all to point out to me that I am, in fact, discussing comic books, where the characters are supposed to be superheroes: What I'm talking about here is the denial of a person - or in this case a character -'s humanity based on a faulty system of beliefs. All I'm saying is that expecting her to just "get over" her attack, and that she will instead buck up & be an inspiration to all is not, in fact, a reasonable path for her character arch to take.)
There's also a large dose of disabilism to be found in the parts of Oracle's storyline which negate her disability completely - In the short lived television show based on Birds of Prey, (which was, incidentally, my first introduction to Oracle), the character is played by Dina Meyer, an able bodied actress. I'm sure the creators of the show would explain that by saying that they had to show Batgirl's story in flashbacks, or the inclusion of the inevitable storyline where she can once again 'miraculously' wiggle her toes, but instead of that being a reason for not using an actress with an actual physical disability, this is rather further proof that the ways individuals with disabilities are portrayed in the media are inadequate. In addition, in the comic books, there are times when Barbara Gordon's body is possessed, and those beings are able to "bypass her paralysis and make her run and fight like a normal person but when they leave her body her paralysis will return completely."
"Like a normal person," huh? That's awesome - There was some discussion revolving around the fact that she's probably "disappointed" when the person WHO POSSESSES HER leaves, because then she's back to being "crippled".
Seeing disability labeled as abnormal is not the only term I had an issue with: Articles, posts and comments were littered with the words handicap, crippled, immobile (although she's clearly mobile), forever confined to/stuck in a wheelchair, and a lot of talk about the fact that she's hindered (rather than empowered) by her chair. Terms that are not only not 'politically correct,' but harmful to the accurate portrayal of individuals with disabilities. There's also the idea that she's both useless and an invalid, and, of course, there's a lot of talk about Oracle being "cured".
The question of the cure is actually one of those areas where the intersectionality of ablism and sexism inherent in (but certainly not restricted to) comic books is made only too obvious:
So there's one double standard, in that ok: Yes, I will grant that Batman probably could figure out a lot of ways to 'cure' her disability, or that Barbara herself would probably, in the way of all superknowledgable superheroines, be able to come up with a pretty good idea of how to accomplish such a feat. But that doesn't mean she should be cured, or that she's any less vital of a character because she hasn't been cured. The discussions revolving around the idea of a cure are some of the most impassioned - people talk about how useless and ridiculous it is that Batgirl hasn't been cured yet, invalidating Oracle completely: If Barbara can only fight crime/be worthwhile/be important when she is Batgirl, then Oracle is a wasted character, nothing more than a "girl in a chair".
I am also largely setting aside the idea that her "crippling" by the Joker is considered by many to be one of the most anti-woman plot devices in the DC Universe (which is full of anti-women storylines, unfortunately), because I just don't know enough about it, having not yet read the issue myself, although I will point you in the direction of a very interesting discussion about Women in Refrigerators vs Dead Men Defrosting, (See Here .
I am going to mention this piece of information, however, because I think it says so much about how 'well-thought out' the creation of a well-rounded character with a disability really was:
Kate, Digital Eraser
Still, from such an offensive beginning, Oracle has become a favorite heroine for many. Even amidst all of the disturbing comments and discussions I was able to find online, there were a lot of positive things being said as well. Most readers described Oracle as invaluable, powerful, and just all around awesome. Some of them talked about how inspirational she is a character living with a disability without being too corny or 'movie of the week', and the writer who 'rescued' Barbara after her attack and gave her her own storyline seems to have a pretty impressive attitude about the whole thing, IMO:
I was shocked by some of the dis/ablism I was confronted with as I wandered around looking for an Oracle action figure (you can see one here, if you're interested), but I probably shouldn't have been. It's not news to me that there are people who say they'd "rather be dead" than have to live "shackled to a chair"... I've met more than one of them in person, unfortunately. But there's a lot of good stuff out there too, a lot of positive feedback on a pretty unique character. I'm going to wrap this up with one last quote (originally intended to discuss sexism, but I think it works pretty well here too):
I hope that as society continues to change, and comic books evolve as well, that the role of disabled characters is one that will continue moving in a more positive direction. Besides: A librarian turned techno-geek turned super-heroine? Tell me that's not the most awesome Halloween costume ever. (Actually, it was not: since nobody in my family reads comics, I spent the entire day trying to explain who Oracle was. Oh well, I still rocked that bluetooth.)
----------------------------------------------------------------------
Thanks for reading, and for participating in BADD. Don't forget to head over to the Goldfish's place for more fabulous posts!
For whatever reason, I was juiced about Halloween this past year: maybe it was the idea that we might, in our new house, have more than three trick-or-treaters, or maybe it was that I'd been feeling like crap and was looking for a reason to be excited - who knows?
Whatever the reason, I decided at the last minute to see if I could throw something together. And so, that Saturday morning, I was searching online with a (pretty great if I do say so myself) idea in mind: Oracle. DC Super heroine, former Batgirl, and wheelchair user extraordinaire. The best part is that since she's a behind the scenes kind of girl - at her most basic level, she's a computer genius who supplies Batman (and numerous other heroes/heroines) with the intelligence necessary to fight crime - she can wear whatever the hell she wants. Jeans, mostly. Sweatpants, sometimes. Excellent: I can handle sweatpants! Accessories? Laptop computer: Check. Bluetooth device: Check. Superintelligence: Easily faked. (Ok, yes she has red hair, but it was dark. And trick-or-treaters are little, so I decide to just pretend there.) So, although I did wish I had a shirt with a bat insignia on it, I figured I was set. What I didn't expect, while searching to make sure my mental picture of Oracle matched up with the reality, was how much abilism I would have to wade through in relation to the character of Oracle herself.
Now, before I get any further, let me just state, for the record, that I am absolutely a newcomer to the comic book world, and I have absolutely no experience with the fandom, the world building, the story arcs: I don't know if Oracle ever had to fight the Riddler, or if she battled Catwoman, or if, as a comment I wandered across suggested, she and Professor Xavier are getting it on in private - because people with disabilities only date other people with disabilities, don't ya know - : For the purposes of this discussion, I will gladly cede the point that I am NOT a comic book genius, and that there's a lot about the DC Universe that I don't know or understand. I am not even going to consider myself worthy of writing a critique of the character, or comic books in general, in regards to different forms of discrimination - the majority of this post is going to instead focus on the ablism inherent in the online discussions of Oracle - that is, the arguments over her fitness as a superheroine, her perceived uselessness when being "confined to a wheelchair", and the unapologetic ablist terminology & attitudes that were displayed in these various discussions.
To start with, there's a lot of argument about whether or not Barbara Gordon is a better character now (as Oracle) than she was as Batgirl, and I'm sure that's a valid discussion to have - which incarnation of a character is the best, why is it the best, etc. What I think are distinctly less valid are observations like -
...Tate comments, “It's ridiculous to think somebody wakes up thinking how lucky they are to be confined to a wheelchair, and yet the attitude around DC and among the fans is that Oracle is the better character over Batgirl because of her handicap. Rubbish. Batgirl has fought more crime and done more to aid Batman as Batgirl than she has as Oracle. Batgirl has saved Batman's life on numerous occasions. Oracle has not. Barbara in this incarnation is not a bad character, but she is not better because she no longer hunts the night in cape and cowl.wikipedia
No: People with disabilities are not better because they're disabled. They're also not worse, either, and that certainly seems to be the implication here - Oracle is not as good as Batgirl, not as worthwhile, not as valuable. Her intellectual skills - genius hacker and supplier of crucial information - are not on par with the kicking and swooping and physicality that she exhibited as Batgirl. She "saved" Batman when she was Batgirl, but that information she provides is apparently not life saving enough. (Although I seem to remember at least one occassion that this was exactly the case.) The alliance building she did with the Justice League of America, the founding of the Birds of Prey (an all female superhero team), her photographic memory, and the fact that she remains a master of numerous martial arts (even though she is "confined" to her wheelchair) is just not 'life saving' enough?
Somebody probably should have told her she was just wasting everybody's time and getting in the way.
Then you can compare that attitude with this one -
James B. South's chapter "Barbara Gordon and Moral Perfectionism" in the 2004 book Superheroes and Philosophy analyzes how the changes in Barbara's life "from librarian to Batgirl to Oracle" drive her to pursue a higher self, illustrating the philosophical theory of moral perfectionism.
wikipedia
And here we get the ideal SuperCrip - able to "get past her bitterness" over being viciously attacked and to overcome the challenges that being "wheelchair bound" must present. But ablisim goes both ways: When you are attributing characteristics to a group of people because of their disabilities - whether those characteristics are negative or positive - you are using stereotypes and ignoring their real value as people. African Americans are not all good at basketball, women are not all bad drivers, and people with disabilities are not pure or without moral imperfections. See this excellent post for all the reasons why being a Supercrip is not only unrealistic, but damaging as well. (And yes, I don't need you all to point out to me that I am, in fact, discussing comic books, where the characters are supposed to be superheroes: What I'm talking about here is the denial of a person - or in this case a character -'s humanity based on a faulty system of beliefs. All I'm saying is that expecting her to just "get over" her attack, and that she will instead buck up & be an inspiration to all is not, in fact, a reasonable path for her character arch to take.)
There's also a large dose of disabilism to be found in the parts of Oracle's storyline which negate her disability completely - In the short lived television show based on Birds of Prey, (which was, incidentally, my first introduction to Oracle), the character is played by Dina Meyer, an able bodied actress. I'm sure the creators of the show would explain that by saying that they had to show Batgirl's story in flashbacks, or the inclusion of the inevitable storyline where she can once again 'miraculously' wiggle her toes, but instead of that being a reason for not using an actress with an actual physical disability, this is rather further proof that the ways individuals with disabilities are portrayed in the media are inadequate. In addition, in the comic books, there are times when Barbara Gordon's body is possessed, and those beings are able to "bypass her paralysis and make her run and fight like a normal person but when they leave her body her paralysis will return completely."
"Like a normal person," huh? That's awesome - There was some discussion revolving around the fact that she's probably "disappointed" when the person WHO POSSESSES HER leaves, because then she's back to being "crippled".
Seeing disability labeled as abnormal is not the only term I had an issue with: Articles, posts and comments were littered with the words handicap, crippled, immobile (although she's clearly mobile), forever confined to/stuck in a wheelchair, and a lot of talk about the fact that she's hindered (rather than empowered) by her chair. Terms that are not only not 'politically correct,' but harmful to the accurate portrayal of individuals with disabilities. There's also the idea that she's both useless and an invalid, and, of course, there's a lot of talk about Oracle being "cured".
The question of the cure is actually one of those areas where the intersectionality of ablism and sexism inherent in (but certainly not restricted to) comic books is made only too obvious:
Just to drive home the point that Barbara Gordon's crippling was sexist, a few years later Batman was also crippled. How long did he spend in a wheelchair? Oh, about a year, and then as a SUPERHERO and PROTAGONIST he was able to make a miraculous recovery. Because Batman is a MAN and a HERO. And Batgirl was disposable.Comment onMyriad Issues by Rusty
So there's one double standard, in that ok: Yes, I will grant that Batman probably could figure out a lot of ways to 'cure' her disability, or that Barbara herself would probably, in the way of all superknowledgable superheroines, be able to come up with a pretty good idea of how to accomplish such a feat. But that doesn't mean she should be cured, or that she's any less vital of a character because she hasn't been cured. The discussions revolving around the idea of a cure are some of the most impassioned - people talk about how useless and ridiculous it is that Batgirl hasn't been cured yet, invalidating Oracle completely: If Barbara can only fight crime/be worthwhile/be important when she is Batgirl, then Oracle is a wasted character, nothing more than a "girl in a chair".
I am also largely setting aside the idea that her "crippling" by the Joker is considered by many to be one of the most anti-woman plot devices in the DC Universe (which is full of anti-women storylines, unfortunately), because I just don't know enough about it, having not yet read the issue myself, although I will point you in the direction of a very interesting discussion about Women in Refrigerators vs Dead Men Defrosting, (See Here .
I am going to mention this piece of information, however, because I think it says so much about how 'well-thought out' the creation of a well-rounded character with a disability really was:
Brian Bolland tells this little story in his recent book The Art Of Brian Bolland:
"Back in Northampton, Alan had to check with editor Len Wein how DC would feel about him crippling one of its key character, Batgirl. Len phoned back. His precise words are not printable here, but the gist of it was that it was okay. The Joker had, after all, to be shown to be a seriously nasty piece of work."
The words that Bolland is too much of a gentleman to reproduce, but which have been retold in various circles, were: "Cripple the bitch!"
And that pretty much sums up the attitude that allows female characters to continue to be mistreated in comics (at DC in particular, it seems).
Kate, Digital Eraser
Still, from such an offensive beginning, Oracle has become a favorite heroine for many. Even amidst all of the disturbing comments and discussions I was able to find online, there were a lot of positive things being said as well. Most readers described Oracle as invaluable, powerful, and just all around awesome. Some of them talked about how inspirational she is a character living with a disability without being too corny or 'movie of the week', and the writer who 'rescued' Barbara after her attack and gave her her own storyline seems to have a pretty impressive attitude about the whole thing, IMO:
We wanted her to cope with what had happened to her and becoming, in many ways, more effective as Oracle than she ever was as Batgirl. And we knew that others with disabilities might look at her and feel good reading about her...I don't think people 'dance around' her disabilities as they don't want to focus on them, but on her character. These shouldn't be stories about a disabled person; they are stories about a compelling fascinating character who HAPPENS to be in a wheelchair and I think that's correct. Barbara isn't her handicap; there's more to her than that.[41] ”wikipedia
I was shocked by some of the dis/ablism I was confronted with as I wandered around looking for an Oracle action figure (you can see one here, if you're interested), but I probably shouldn't have been. It's not news to me that there are people who say they'd "rather be dead" than have to live "shackled to a chair"... I've met more than one of them in person, unfortunately. But there's a lot of good stuff out there too, a lot of positive feedback on a pretty unique character. I'm going to wrap this up with one last quote (originally intended to discuss sexism, but I think it works pretty well here too):
GoodComics
"Comics have always attracted intelligent people as fans, especially among women, and the idea of a superhero who uses her brains instead of her fists to defeat criminals is one that has deep attraction, especially with the rise of the Internet. Batgirl evolved from being a dilettante librarian to a tech-savvy geek girl, just in time for the Information Age. Her storytelling engine seems to constantly reflect the evolving role of women in society, and her popularity reflects the fact that comics are no longer just a boy's club.
I hope that as society continues to change, and comic books evolve as well, that the role of disabled characters is one that will continue moving in a more positive direction. Besides: A librarian turned techno-geek turned super-heroine? Tell me that's not the most awesome Halloween costume ever. (Actually, it was not: since nobody in my family reads comics, I spent the entire day trying to explain who Oracle was. Oh well, I still rocked that bluetooth.)
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Thanks for reading, and for participating in BADD. Don't forget to head over to the Goldfish's place for more fabulous posts!
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.
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.
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.)
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.
You can find the full criteria Here, as well as a link to where you can submit your own comments.
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.
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 needherhim?
(Did you know he was a he? I didn't.)
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
(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.
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.
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.
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.
Wednesday, March 31, 2010
I am attempting
to write a letter of recommendation for SisterCh, in regards to an apartment she and her fiance are hoping to rent. It is tricky to do.
Particularly if I want to be honest. (It's a good thing I have my BS, because I have learned the art of putting a kernel of truth in the best possible light.)
All the advice says things like "tell how reliable she is, that she pays her bills on time." But I can't say that I have any experience of that personally - she doesn't pay rent here, and only just paid off the money she borrowed from me for SisterJ's wedding (yeah, that's nearly 2 years and various weekend vacations for her later). But, I do know that she paid her rent on time and in full when she lived in a condo before, so I can say that.
I am absolutely able to rave about her turning a temp position that was only supposed to last 6 months into a full-time position with full benefits and a raise 3 years later. I am immensely proud of her for that, and I know that she deserves a lot of kudos for it, so that definitely goes in. (2 paragraphs down, one to two more to go).
Next advice: "Discuss how neighborly she is" Um Yeah - Roadblock. See, SisterCh and I have a long and complicated history of her being particularly unneighborly, in my opinion.
I have a lot of needs that other people have to take into consideration, and SisterCh has not always understood, embraced, or really cared about that. She's been the hardest of my siblings to educate about my condition, hands down. Mostly, I think, because she was really young when I got sick, and I'm pretty sure she has a lot of resentment about how much of our parents' (mostly our mom's) attention I managed to siphon off by being, you know, nearly dead. I know part of her is still very much in the whole "suck it up"/"get over it already" camp, and her dismissive attitude has been incredibly hurtful to me for years.
Which isn't to say she hasn't improved. Because, in a lot of ways, she has: the smell thing is still a battle occasionally, but it's not a daily battle, it's not the constant me being trapped in my room until an hour after she leaves for work nonsense that it used to be. She may still roll her eyes when I say something is bothering me, but we don't scream and shout about it as much as we used to. We've both gotten a lot better at walking away before our feelings get too trampled (mostly).
Nowadays, she sends me e-mails when she finds unscented lip glosses, offers to share her work discount with me when I tell her I'm searching for a new computer, or posts a link to some FM article where they talk about vitamins (:sigh: on that last one, but at least she's trying). And she nearly decked a waitress last week when she patted me on the back, so that's a plus.
So, yeah, she's growing up. We both are, and it's helping us.
She's also taking responsibility for her fiance's kids, and I think that, in the process, she's getting to be more mature & understanding, and I hope that our relationship will continue to improve as we both get older, but she's still the same girl who told me I was a selfish bitch because I needed her to stop spraying her perfume in the house. She's still the same girl who rolls her eyes when I say she doesn't understand how lucky she is to not have to worry about whether or not a ride in the car will make her head spin for the next three days, or complains when I open the window to air out a (freezing but) smelly house. Or who stops speaking to her sister without even realizing that the thing they are 'fighting' about is not the end of the world.
Which is why you shouldn't ask your sister to write a letter of recommendation for you, I think. Because sisters' relationships are too complex. Because being her sister means I would kill for her, but sometimes I can't stand to be in the same room as her.
I could write about how much I love her, and how proud I am of her, and how brave I think she was the time she stood up to our dad and told him to fuck off (he really deserved it), but I don't think that that will get her the apartment, really. I could write about how she and SisterJ used to be thick as thieves (actual, literal thieves who stole all my good toys when they thought I wasn't looking), but now they just can't figure out how to speak the same language & that it hurts my heart, but that also doesn't really seem like what they are looking for.
So, instead, I'll write things like "In her previous living spaces, she took pride in maintaining a lovely home, always managing to keep her areas clean and tidy." Which, if you cold see her room right now, would seem like an outright LIE, but I know that when she lived in the condo, she was impeccable, so it technically isn't - I did say "previous" living spaces.
Back to work, trying to make 24 years of sisterhood & obsessive love (Do you think it would help if I mentioned how, when she was a little girl, she was really shy and I lugged her around on my hip for the better part of three years? Nah, I didn't think so either.) sound totally positive and not at all twisty and complex.
Particularly if I want to be honest. (It's a good thing I have my BS, because I have learned the art of putting a kernel of truth in the best possible light.)
All the advice says things like "tell how reliable she is, that she pays her bills on time." But I can't say that I have any experience of that personally - she doesn't pay rent here, and only just paid off the money she borrowed from me for SisterJ's wedding (yeah, that's nearly 2 years and various weekend vacations for her later). But, I do know that she paid her rent on time and in full when she lived in a condo before, so I can say that.
I am absolutely able to rave about her turning a temp position that was only supposed to last 6 months into a full-time position with full benefits and a raise 3 years later. I am immensely proud of her for that, and I know that she deserves a lot of kudos for it, so that definitely goes in. (2 paragraphs down, one to two more to go).
Next advice: "Discuss how neighborly she is" Um Yeah - Roadblock. See, SisterCh and I have a long and complicated history of her being particularly unneighborly, in my opinion.
I have a lot of needs that other people have to take into consideration, and SisterCh has not always understood, embraced, or really cared about that. She's been the hardest of my siblings to educate about my condition, hands down. Mostly, I think, because she was really young when I got sick, and I'm pretty sure she has a lot of resentment about how much of our parents' (mostly our mom's) attention I managed to siphon off by being, you know, nearly dead. I know part of her is still very much in the whole "suck it up"/"get over it already" camp, and her dismissive attitude has been incredibly hurtful to me for years.
Which isn't to say she hasn't improved. Because, in a lot of ways, she has: the smell thing is still a battle occasionally, but it's not a daily battle, it's not the constant me being trapped in my room until an hour after she leaves for work nonsense that it used to be. She may still roll her eyes when I say something is bothering me, but we don't scream and shout about it as much as we used to. We've both gotten a lot better at walking away before our feelings get too trampled (mostly).
Nowadays, she sends me e-mails when she finds unscented lip glosses, offers to share her work discount with me when I tell her I'm searching for a new computer, or posts a link to some FM article where they talk about vitamins (:sigh: on that last one, but at least she's trying). And she nearly decked a waitress last week when she patted me on the back, so that's a plus.
So, yeah, she's growing up. We both are, and it's helping us.
She's also taking responsibility for her fiance's kids, and I think that, in the process, she's getting to be more mature & understanding, and I hope that our relationship will continue to improve as we both get older, but she's still the same girl who told me I was a selfish bitch because I needed her to stop spraying her perfume in the house. She's still the same girl who rolls her eyes when I say she doesn't understand how lucky she is to not have to worry about whether or not a ride in the car will make her head spin for the next three days, or complains when I open the window to air out a (freezing but) smelly house. Or who stops speaking to her sister without even realizing that the thing they are 'fighting' about is not the end of the world.
Which is why you shouldn't ask your sister to write a letter of recommendation for you, I think. Because sisters' relationships are too complex. Because being her sister means I would kill for her, but sometimes I can't stand to be in the same room as her.
I could write about how much I love her, and how proud I am of her, and how brave I think she was the time she stood up to our dad and told him to fuck off (he really deserved it), but I don't think that that will get her the apartment, really. I could write about how she and SisterJ used to be thick as thieves (actual, literal thieves who stole all my good toys when they thought I wasn't looking), but now they just can't figure out how to speak the same language & that it hurts my heart, but that also doesn't really seem like what they are looking for.
So, instead, I'll write things like "In her previous living spaces, she took pride in maintaining a lovely home, always managing to keep her areas clean and tidy." Which, if you cold see her room right now, would seem like an outright LIE, but I know that when she lived in the condo, she was impeccable, so it technically isn't - I did say "previous" living spaces.
Back to work, trying to make 24 years of sisterhood & obsessive love (Do you think it would help if I mentioned how, when she was a little girl, she was really shy and I lugged her around on my hip for the better part of three years? Nah, I didn't think so either.) sound totally positive and not at all twisty and complex.
She is your mirror, shining back at you with a world of possibilities. She is your witness, who sees you at your worst and best, and loves you anyway. She is your partner in crime, your midnight companion, someone who knows when you are smiling, even in the dark. She is your teacher, your defense attorney, your personal press agent, even your shrink. Some days, she's the reason you wish you were an only child. Barbara Alpert
Friday, March 26, 2010
You know what I am really good at?
Drafts. I rock at first drafts; love second drafts, have been known to have as many as 16 drafts of something before I am even close to happy with it. I was that annoying kid at school who would enjoy the peer editing conferences, knowing that I would get another chance to fix all the things that needed to be fixed. I have about 7200 of them sitting around right now: A first draft of a children's book I started writing 12 years ago; a hilariously poor batch of poems. A first draft of a letter to an old friend, two or three drafts of outrage (or, less likely, praise) to my senators; one for my aunt, sitting around waiting for me to add pictures. Hundreds of posts sitting in the draft folder. Probably the same number of e-mails sitting in that drafts folder. I go through drafts and drafts and drafts of every To Do list - with a lot more carry over and a lot less crossing off than I would like, unfortunately.
The only kind of draft I am not exceptionally good at? Final drafts.
And do you know that it has taken me the better part of my 30 years on the planet to make the connection between my labor intensive and research rich drafting process and plain old procrastination?
"But I'm working on it!" I can say to myself - "I'm re-thinking it, I'm re-working it, it's still percolating, it's not all the way there yet, not Done with a capital D Done." Right, and it's often true that things need more tweaking. But there comes a point where you are just holding on to something, just keeping it your control for as long as possible. At some point, though?
You need to finish things. You need to make the decision, write "The End", cross everything off the list (or decide it's not worth completing and toss it), stick it in the mail and sent it off.
One of the things that I've crossed off my list this week is deciding to have the sinus surgery. After my appointments last week, I did a bunch of research, I wrote about it here (once or twice), I asked for opinions and spent hours talking to someone I (only sort of) know who had a similar procedure. I wrote pro/con lists (yes: I actually do this), and argued with myself for as long as I could. Then I procrastinated a little bit because the answer I had wound up with was not the answer I wanted to wind up with. And then I passed in my final draft, and told the doctor to sign me up.
I'm still nervous, and I don't like that I have to have it, but it's pretty clear that I have to have it. I still don't know when, but that's the doctor's fault not mine. (His surgical nurse is supposed to get back to me next week with a date.) The good news is that my case is severe enough to require a special kind of sinus surgery, which can be done on an outpatient basis (Do not even ask me: the less severe surgery is inpatient, mine is all laparoscopic and laser-y, and so then I get to go home on the same day. Yay.) Also on the good news side of things is that the surgical nurse seemed to understand that liquid pain medication will be very important (bc I'm also getting my tonsils out. Did I forget to mention that? Yeah, they were what started this whole damn thing in the first place.) and was very clear on the fact that, since I won't be able to take my regular pain meds for at least a day or two, then I'm going to need alternatives.
So: final decision made. Now if I could just get the damn computer out of draft mode (Current draft title: "You cannot afford a Mac: choose again"), then I'd be all set.
The only kind of draft I am not exceptionally good at? Final drafts.
And do you know that it has taken me the better part of my 30 years on the planet to make the connection between my labor intensive and research rich drafting process and plain old procrastination?
"But I'm working on it!" I can say to myself - "I'm re-thinking it, I'm re-working it, it's still percolating, it's not all the way there yet, not Done with a capital D Done." Right, and it's often true that things need more tweaking. But there comes a point where you are just holding on to something, just keeping it your control for as long as possible. At some point, though?
You need to finish things. You need to make the decision, write "The End", cross everything off the list (or decide it's not worth completing and toss it), stick it in the mail and sent it off.
One of the things that I've crossed off my list this week is deciding to have the sinus surgery. After my appointments last week, I did a bunch of research, I wrote about it here (once or twice), I asked for opinions and spent hours talking to someone I (only sort of) know who had a similar procedure. I wrote pro/con lists (yes: I actually do this), and argued with myself for as long as I could. Then I procrastinated a little bit because the answer I had wound up with was not the answer I wanted to wind up with. And then I passed in my final draft, and told the doctor to sign me up.
I'm still nervous, and I don't like that I have to have it, but it's pretty clear that I have to have it. I still don't know when, but that's the doctor's fault not mine. (His surgical nurse is supposed to get back to me next week with a date.) The good news is that my case is severe enough to require a special kind of sinus surgery, which can be done on an outpatient basis (Do not even ask me: the less severe surgery is inpatient, mine is all laparoscopic and laser-y, and so then I get to go home on the same day. Yay.) Also on the good news side of things is that the surgical nurse seemed to understand that liquid pain medication will be very important (bc I'm also getting my tonsils out. Did I forget to mention that? Yeah, they were what started this whole damn thing in the first place.) and was very clear on the fact that, since I won't be able to take my regular pain meds for at least a day or two, then I'm going to need alternatives.
So: final decision made. Now if I could just get the damn computer out of draft mode (Current draft title: "You cannot afford a Mac: choose again"), then I'd be all set.
Wednesday, March 24, 2010
What I would say, if I were brave enough
Dear Facebook Friends,
I am genuinely glad that you are expecting your (insert number here) child. You are my friend, and I'm so glad for you (especially those of you that have been TTC for quite a while). I will happily attend baby showers and baptisms, and am already shopping for a gift to take to the hospital. But I am also sickeningly jealous, because the only thing I want more than getting well is a family of my own. So if you decide to complain about a)the gender of your baby or b)the fact that you are a little more tired than you usually are, you'll have to excuse me if I don't join in on the pity party. I know you have a right to how you feel, but since right now I feel like I'd rather be you on your worst day than me on my best, I'm just going to ignore your posts for a while and come back for the big announcement.
Kind of Sorry About This, and with Lots of Love, NTE
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Dear Facebook Friends,
I am glad you get to spend your time playing games that entertain you such as Farmville, MafiaWars, Sorority House, Godfather, Wizard World, ZooPets, etc. For myself, however, I know that if I were to join you in playing any of these games, it would not go well. I have a limited amount of energy as it is, and if I get sucked into playing a highly addictive game (and I can see by the number of posts you have each day, these games are highly addictive), then I would get less than nothing accomplished. (Evidence Bejeweled Blast, and the fact that I had to uninstall it from my page, lest I get sucked in again.) So please, please stop asking me to join yourcult community: even if I liked it, it would be bad for me.
Love, NTE
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Dear people I used to know and now only sort of know because we are "friends" on Facebook,
Perhaps you are unaware of my particular life circumstances, and that is fine: I understand that we haven't been close in the 10-15 years since we've last seen each other, and so how were you to know? But if I post something about how I am feeling, or the status of my 1200th doctor's appointment of the week, or if you happen to see a picture of current-ish me (of which there should be none: although sometimes my siblings sneak them in when I am not vigilant enough) and notice that I am in a wheelchair, it is not an appropriate response for you to say things like "Damn, what happened to you?" or "Really, you're that sick? I would kill myself if that happened to me." It's called common sense, people. Rudeness is still rudeness, even if you're typing it.
Whatever, NTE
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Dear Facebook Friends who are too cutesy,
If I have to hear how your and your fiance/husband/boyfriend are head over heels, lovey dovey, to the end of the earth and back, never been in love like this before in LOVE, one more time, I might unfriend you. Just warning you. You have a right to be happy, but I have a right not to roll my eyes every time I open up my homepage, too. I am actually glad that you are in a happy and stable relationship, but if you called each other those cutesy names in real life, in public, your friends would laugh at you and walk away. So maybe you should just keep it to the private messages, and leave the "smooshy" "bestie" "Daddy" (ick) & "Snookums" (Really? Unironically?) for when you're actually seeing each other, so that I don't have to read it. Deal?
Love, NTE (See how I could say that without drawing 17 hearts in a row? You could try that too!)
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Dear Facebook addicts who tell me I don't update my status enough or think I should get a Twitter,
Honestly? Most weeks, if I updated my status daily/tweeted it would look like this:
Ow.
Ow.
Ow, plus Lil Girl is here.
Ow, am recuperating from Lil Girl.
Look, Ow & now Lil Girl is here again.
Ow, and now I have another doctor's appointment that I don't want to go to and will probably be a big waste of time.
OUCH. Doctor's appointment was a painful bust, but now I have pill number 756 to try, so we'll see if that works.
LOOK A PURPLE UNICORN.
Pill Number 756 gave me hives. And hallucinations. Am not taking it anymore.
Ow.
Actually, that's a lot more interesting than my normal week - purple unicorns are few and far between here (hives, unfortunately, are much more common). I realize that since you are working, you might have something new to talk about all the time, but for me, my life is a lot of same shit, different day. So, you should be glad that I only post things when they're actually interesting. Ow loses its meaning, after awhile.
Thanks for thinking I'm interesting, even when I'm actually not, NTE
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Dear Family Members/Friends from elementary school,
You do know I have lots of embarrassing pictures of you, right? And that I am consciously choosing not to post them? Ok, so maybe you don't want to get on my bad side, is all I'm saying.
Really.
Love, NTE
I am genuinely glad that you are expecting your (insert number here) child. You are my friend, and I'm so glad for you (especially those of you that have been TTC for quite a while). I will happily attend baby showers and baptisms, and am already shopping for a gift to take to the hospital. But I am also sickeningly jealous, because the only thing I want more than getting well is a family of my own. So if you decide to complain about a)the gender of your baby or b)the fact that you are a little more tired than you usually are, you'll have to excuse me if I don't join in on the pity party. I know you have a right to how you feel, but since right now I feel like I'd rather be you on your worst day than me on my best, I'm just going to ignore your posts for a while and come back for the big announcement.
Kind of Sorry About This, and with Lots of Love, NTE
------------------------------------------------------------------------------------
Dear Facebook Friends,
I am glad you get to spend your time playing games that entertain you such as Farmville, MafiaWars, Sorority House, Godfather, Wizard World, ZooPets, etc. For myself, however, I know that if I were to join you in playing any of these games, it would not go well. I have a limited amount of energy as it is, and if I get sucked into playing a highly addictive game (and I can see by the number of posts you have each day, these games are highly addictive), then I would get less than nothing accomplished. (Evidence Bejeweled Blast, and the fact that I had to uninstall it from my page, lest I get sucked in again.) So please, please stop asking me to join your
Love, NTE
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Dear people I used to know and now only sort of know because we are "friends" on Facebook,
Perhaps you are unaware of my particular life circumstances, and that is fine: I understand that we haven't been close in the 10-15 years since we've last seen each other, and so how were you to know? But if I post something about how I am feeling, or the status of my 1200th doctor's appointment of the week, or if you happen to see a picture of current-ish me (of which there should be none: although sometimes my siblings sneak them in when I am not vigilant enough) and notice that I am in a wheelchair, it is not an appropriate response for you to say things like "Damn, what happened to you?" or "Really, you're that sick? I would kill myself if that happened to me." It's called common sense, people. Rudeness is still rudeness, even if you're typing it.
Whatever, NTE
--------------------------------------------------------------------------------
Dear Facebook Friends who are too cutesy,
If I have to hear how your and your fiance/husband/boyfriend are head over heels, lovey dovey, to the end of the earth and back, never been in love like this before in LOVE, one more time, I might unfriend you. Just warning you. You have a right to be happy, but I have a right not to roll my eyes every time I open up my homepage, too. I am actually glad that you are in a happy and stable relationship, but if you called each other those cutesy names in real life, in public, your friends would laugh at you and walk away. So maybe you should just keep it to the private messages, and leave the "smooshy" "bestie" "Daddy" (ick) & "Snookums" (Really? Unironically?) for when you're actually seeing each other, so that I don't have to read it. Deal?
Love, NTE (See how I could say that without drawing 17 hearts in a row? You could try that too!)
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Dear Facebook addicts who tell me I don't update my status enough or think I should get a Twitter,
Honestly? Most weeks, if I updated my status daily/tweeted it would look like this:
Ow.
Ow.
Ow, plus Lil Girl is here.
Ow, am recuperating from Lil Girl.
Look, Ow & now Lil Girl is here again.
Ow, and now I have another doctor's appointment that I don't want to go to and will probably be a big waste of time.
OUCH. Doctor's appointment was a painful bust, but now I have pill number 756 to try, so we'll see if that works.
LOOK A PURPLE UNICORN.
Pill Number 756 gave me hives. And hallucinations. Am not taking it anymore.
Ow.
Actually, that's a lot more interesting than my normal week - purple unicorns are few and far between here (hives, unfortunately, are much more common). I realize that since you are working, you might have something new to talk about all the time, but for me, my life is a lot of same shit, different day. So, you should be glad that I only post things when they're actually interesting. Ow loses its meaning, after awhile.
Thanks for thinking I'm interesting, even when I'm actually not, NTE
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Dear Family Members/Friends from elementary school,
You do know I have lots of embarrassing pictures of you, right? And that I am consciously choosing not to post them? Ok, so maybe you don't want to get on my bad side, is all I'm saying.
Really.
Love, NTE
Sunday, March 21, 2010
"But if the road's been kinda bumpy, And you need to rest a spell Well, welcome home to Happiness Hotel"
The very fabulous Sue, over at Learning To Live with CFS gave me The Happiness Award last week, and I can't thank her enough for it. What with all my obsessing and decision nonmaking, it was nice to have something positive to focus on.
So here is a (very random) list of things that make me happy right now:
We'll start off with these four - Oldest Nephew, (No Longer) Youngest Nephew, BabyB, and Lil Girl, the beginning of the next generation of our own special brand of weirdos.
Being able to open the windows. Fresh air without the sunshine is just the kind I need.
Talking to people who listen, care, and (at the very least try to) get it... in person, on the phone, or on the computer.
Having a nice fat TBR pile. (I get antsy if it's not big enough. TWSS.)
My parents are away for the weekend, and I'm glad for them, since they never go anywhere.
Family Friendly Weekends, on WERS; the Emerson College radio station. From 10-8 on Saturdays and 12-8 on Sundays, they play the kind of music you don't hear much of on the radio anymore. It's Broadway, show tunes & soundtracks in the morning, with Standing Room Only; All A Capella in the afternoon, and a program called the Playground in the evening, which is "music for the young and young at heart". It may just be me, but I think there aren't enough radio stations playing the Tale Spin theme song nowadays.
And we'll finish off with the Muppets, because how can you be grumpy if Animal is banging the drum?
I'm not going to link to other blogs, mostly because I don't have that many readers, but also because Sue said I didn't have to. But if you read, and you'd like to play along, consider yourself an award recipient.
So here is a (very random) list of things that make me happy right now:
We'll start off with these four - Oldest Nephew, (No Longer) Youngest Nephew, BabyB, and Lil Girl, the beginning of the next generation of our own special brand of weirdos.
Being able to open the windows. Fresh air without the sunshine is just the kind I need.
Talking to people who listen, care, and (at the very least try to) get it... in person, on the phone, or on the computer.
Having a nice fat TBR pile. (I get antsy if it's not big enough. TWSS.)
My parents are away for the weekend, and I'm glad for them, since they never go anywhere.
Family Friendly Weekends, on WERS; the Emerson College radio station. From 10-8 on Saturdays and 12-8 on Sundays, they play the kind of music you don't hear much of on the radio anymore. It's Broadway, show tunes & soundtracks in the morning, with Standing Room Only; All A Capella in the afternoon, and a program called the Playground in the evening, which is "music for the young and young at heart". It may just be me, but I think there aren't enough radio stations playing the Tale Spin theme song nowadays.
And we'll finish off with the Muppets, because how can you be grumpy if Animal is banging the drum?
I'm not going to link to other blogs, mostly because I don't have that many readers, but also because Sue said I didn't have to. But if you read, and you'd like to play along, consider yourself an award recipient.
Tuesday, March 16, 2010
Change of subject
_filtered.jpg)
Head on over to I Heart Faces to check out the rest of the (gulp: 600+) entries, to see some fantastic shots.
Thanks guys!
Appreciate the support and will keep you updated. I've got a follow-up booked for Thursday, so we shall see what he says then. Till then, I am going to try to cheer myself up by posting some pictures: enjoy!
Sunday, March 14, 2010
In which I ramble (again) ...
I know my posting these past few weeks has been lean - and it will probably get leaner still, should I have to have that damn surgery - but, fear not; I have not been sitting around wasting time. (Or, more accurately, I have not just been sitting around wasting time, since I did, in fact play more than my fair share of Bewjewled Blast on Facebook.)
No, I've been thinking. And plotting. And researching. Oh my heavens, with the researching.... Here are some things I have done, based on my research:
- I attempted to repair my laptop my own damn self: After reading a lot of blog posts and watching a video or two, I came up with the smart idea that the problem was the LCD inverter. So I tracked one down on E-bay, unscrewed my screen, and hooked the new inverter to the rest of the screen. Unfortunately, it was not the problem. This is unfortunate because A) that part only cost me $10 and fixing the damn computer for $10 would have been awesome, B) the part that is actually broken is most likely the LCD backlight, which is a little more expensive (ok, 10x more expensive), and that sucks, and C) not fixing the damn laptop means that I still have to steal mom's netbook. On the plus side, however - I took apart (and put back together) a computer screen solo. This is no small accomplishment for a girl who failed a Lego class.
- I have learned a little bit more about Macs, and using Photoshop with Macs (or even Windows with Mac, if necessary), and now only need to get my butt to the store to see what size will fit me best. (I have tried to have this size conversation with three people in the past week or so, and NO MATTER WHICH WAY I try to say it, it always ends up in a "That's what she said" type of comment. There is no avoiding it - if you're talking about size, TWSS will naturally appear.)
- I have found a new book series that I think (no longer) Youngest Nephew would like to read, and have started reading it myself.
- I may have found about 27 new books for me to read. And PBS-ed them. And read a few of them.
- I have found a couple of fun things for us to do this summer (hopefully).
- I have realized that I have a real issue with eating, and I'm working on it. (Awesome new-to-me resource: Did you know eating is not actually supposed to be a chore? Somewhere around the time that my meds killed my appetite, food and I started to have a very complicated relationship. I'm excited to think that can change, even though I can't afford the sessions she offers, just reading her blog has been so worthwhile for me.)
- I have scared myself out of sinus surgery. Twice. And scared myself back into it twice as well. Needless to say, I am very confused about this damn surgery, and am retroactively glad that my appendix decided to twist itself up in such a way that decision making was unnecessary: The only thing I thought that day was "Holy hell, did I just throw up blood??"
- I am trying to be kind to myself while I waffle over this decision, but I feel stupid, and inadequate, and ridiculous. No one has actually said anything mean to me about it, but I feel horribly judged - if I decide against the surgery (because it is painful, and because I don't heal well (no matter what the doctor tells me is "normal" healing), and because I petrified that this will make things worse instead of better, and because I don't know if I can handle that), I will never know if this is the thing that could have made me better. I will always wonder "what if". Maybe the people around me will wonder "what if" too, and judge me and think that I don't want to get better, because I don't want to do this one thing. If I do have the surgery (because it might actually solve a real problem, and because the doctors think it's my best bet to ward of the ever-present infections), then my face might get messed up. And - although I do not, generally, consider myself to be a particularly vain person - it is my face. And my sinuses might wind up worse than they are now, which would leave me worse than I am now. Or I might not heal right, because I never have before. And on and on and on.
- I have given myself permission to feel stupid and call and ask the doctor for another consultation, because I did not understand everything he told me that first day. That first day, it was all hypothetical and "then we do this" and "ten days later, good as new." Now, it is My Face, and My Body, and My Nose that you are going to be shoving a hammer up. Now, it's "Why should I do this? What are the real benefits?" and "How do I take my medications for 10 days if I can't swallow things?" So, yeah: I think I need more than 6 minutes of your time. And I'm sorry if that inconveniences you. (I think I am spoiled by Zach, who sat with me for 45 minutes on Friday - during a completely unrelated visit - and said things like "Don't do it if you're not ready" and "You have to realize that doctor's only know what they know - you know you." )
- I have finally posted something on my blog again - with words and thoughts and everything!
No, I've been thinking. And plotting. And researching. Oh my heavens, with the researching.... Here are some things I have done, based on my research:
- I attempted to repair my laptop my own damn self: After reading a lot of blog posts and watching a video or two, I came up with the smart idea that the problem was the LCD inverter. So I tracked one down on E-bay, unscrewed my screen, and hooked the new inverter to the rest of the screen. Unfortunately, it was not the problem. This is unfortunate because A) that part only cost me $10 and fixing the damn computer for $10 would have been awesome, B) the part that is actually broken is most likely the LCD backlight, which is a little more expensive (ok, 10x more expensive), and that sucks, and C) not fixing the damn laptop means that I still have to steal mom's netbook. On the plus side, however - I took apart (and put back together) a computer screen solo. This is no small accomplishment for a girl who failed a Lego class.
- I have learned a little bit more about Macs, and using Photoshop with Macs (or even Windows with Mac, if necessary), and now only need to get my butt to the store to see what size will fit me best. (I have tried to have this size conversation with three people in the past week or so, and NO MATTER WHICH WAY I try to say it, it always ends up in a "That's what she said" type of comment. There is no avoiding it - if you're talking about size, TWSS will naturally appear.)
- I have found a new book series that I think (no longer) Youngest Nephew would like to read, and have started reading it myself.
- I may have found about 27 new books for me to read. And PBS-ed them. And read a few of them.
- I have found a couple of fun things for us to do this summer (hopefully).
- I have realized that I have a real issue with eating, and I'm working on it. (Awesome new-to-me resource: Did you know eating is not actually supposed to be a chore? Somewhere around the time that my meds killed my appetite, food and I started to have a very complicated relationship. I'm excited to think that can change, even though I can't afford the sessions she offers, just reading her blog has been so worthwhile for me.)
- I have scared myself out of sinus surgery. Twice. And scared myself back into it twice as well. Needless to say, I am very confused about this damn surgery, and am retroactively glad that my appendix decided to twist itself up in such a way that decision making was unnecessary: The only thing I thought that day was "Holy hell, did I just throw up blood??"
- I am trying to be kind to myself while I waffle over this decision, but I feel stupid, and inadequate, and ridiculous. No one has actually said anything mean to me about it, but I feel horribly judged - if I decide against the surgery (because it is painful, and because I don't heal well (no matter what the doctor tells me is "normal" healing), and because I petrified that this will make things worse instead of better, and because I don't know if I can handle that), I will never know if this is the thing that could have made me better. I will always wonder "what if". Maybe the people around me will wonder "what if" too, and judge me and think that I don't want to get better, because I don't want to do this one thing. If I do have the surgery (because it might actually solve a real problem, and because the doctors think it's my best bet to ward of the ever-present infections), then my face might get messed up. And - although I do not, generally, consider myself to be a particularly vain person - it is my face. And my sinuses might wind up worse than they are now, which would leave me worse than I am now. Or I might not heal right, because I never have before. And on and on and on.
- I have given myself permission to feel stupid and call and ask the doctor for another consultation, because I did not understand everything he told me that first day. That first day, it was all hypothetical and "then we do this" and "ten days later, good as new." Now, it is My Face, and My Body, and My Nose that you are going to be shoving a hammer up. Now, it's "Why should I do this? What are the real benefits?" and "How do I take my medications for 10 days if I can't swallow things?" So, yeah: I think I need more than 6 minutes of your time. And I'm sorry if that inconveniences you. (I think I am spoiled by Zach, who sat with me for 45 minutes on Friday - during a completely unrelated visit - and said things like "Don't do it if you're not ready" and "You have to realize that doctor's only know what they know - you know you." )
- I have finally posted something on my blog again - with words and thoughts and everything!
Wednesday, March 10, 2010
A sweet little song,
because everything I'm writing looks as if I've forgotten how to combine consonants and vowels into words. So, here: Zooey always cheers me up. Zooey and hula hoops? Even better.
Saturday, March 06, 2010
Thanks for all those well thought-out replies
to my computer search questions. The responses (here and on my Facebook) have been overwhelmingly pro-Mac, so I'm going to see if I can carve out some time to get back to the Apple store at the mall, try to play with it a little bit more. I think I can swing it, moneywise, if I go for the mid-range version of the Macbook Pro, rather than the high-end one. (And, really? I do not need, nor would I like, a 17" screen.) So I'm going to go play with the 15"-ers and see how that works out. I'm glad to know that the OS is easy to learn: I have no doubts that it's easier once you know it, so my real concern has been, knowing nothing about it, how long will it take me to figure it out? But I've been doing more research (Hello: I'm NTE, Chronic-over-researcher, nice to meet you), and I think it seems do-able.
The only remaining cons are program-wise: that most of my files are in Office format, and that I don't have Mac Photoshop, which is one of my preferred tools for photo-editing, but I think I can get around that if I have to (either by fixing what I think is currently wrong with the old laptop, and using it specifically for that, or installing it on Mum's netbook and saving up files that I want to 'shop). So, I think I'm a Mac, and I'm going to go play with one tomorrow or Monday, just to be sure. I'm already searching for good deals (which are much harder to come back with the Macs, unfortunately) so that I can buy it ASAP.
Thanks for all your advice: Personal experiences count for a lot, when it comes to stuff like this. I think what tips the scales for me is the customer service... HP customer service has been really hit or miss (and mostly miss) for five years; I need something I can rely on, and the Genius Bar gets high marks for helpfulness.
So, barring something unexpected, I should order my new computer this week: pretty exciting!
The only remaining cons are program-wise: that most of my files are in Office format, and that I don't have Mac Photoshop, which is one of my preferred tools for photo-editing, but I think I can get around that if I have to (either by fixing what I think is currently wrong with the old laptop, and using it specifically for that, or installing it on Mum's netbook and saving up files that I want to 'shop). So, I think I'm a Mac, and I'm going to go play with one tomorrow or Monday, just to be sure. I'm already searching for good deals (which are much harder to come back with the Macs, unfortunately) so that I can buy it ASAP.
Thanks for all your advice: Personal experiences count for a lot, when it comes to stuff like this. I think what tips the scales for me is the customer service... HP customer service has been really hit or miss (and mostly miss) for five years; I need something I can rely on, and the Genius Bar gets high marks for helpfulness.
So, barring something unexpected, I should order my new computer this week: pretty exciting!
Thursday, March 04, 2010
Wednesday, March 03, 2010
Still no new computer: I'm trying to decide, definitively, if I am a Mac or a PC. Right now, this is boiling down to two issues:
1) Do I have enough brain power to learn a new operating system? Even though every Mac user I have talked to says that it's an incredibly intuitive OS, it's still not what I am used to, and will therefore require me to learn things. Thinking back, I know I taught myself DOS and, later, Windows (we had a computer before Windows - can you even imagine?) when I started using them, but I am not as smart as I used to be. I say this semi-jokingly, but it's true: brain fog is my real enemy now, in a way it didn't used to be, so that even things that should be simple wind up being unbearably complicated. So I have to really consider whether I have the energy to deal with learning a new thing. (This is a particularly important consideration when you're thinking about things breaking - when my PC stops running, I know of about 13 different ways to try to get it back up again... with a Mac, I'm clueless, and would probably make things much worse.)
2) How much money can I spend? Did you know that if you are on SSI, you can't have more than $2000 in the bank? Yeah - people with disabilities are apparently an exception to the whole needing to have money/plan for the future in anyway thing. (You can read a great rant about that on FWD, if I can find the link.) So I'm not allowed to have over $2000, and a 15 inch Mac starts at $1600. Which means, less taxes and whatever else, I would have about $300 to my name. Until April. I am not entirely comfortable with this, as I am generally "worst case scenario" prepared - I like to have the cash on hand. So I'm trying to figure out how to get the most bang for my buck.
There's a couple of other considerations... like I have no Mac programs, which, when it comes to photo editing, is kind of important; knowing your tools and how to use them. And then there's the fact that I need to make the RIGHT decision, or else beat myself up for all eternity. Blah. Choices - who needs them?
No, I need them, and I need to make this one - I hate being wishy washy, especially about something so trivial. But I think I kind of obsess about the more trivial things I can control, since there's no use obsessing about the stuff I can't control and would like to. BUT I'm going to set myself a deadline of this weekend, and see if I can do a last bit of research either tomorrow night (we're having a Lil Girl sleepover tonight, so that's out) or Friday morning before I finally get the damn CT scan for my sinuses (that the doc ordered 4 weeks ago - GROWL - and which will necessitate me making an actually important decision about whether or not to have the surgery - double growl.) And then my bank card will weep for a few weeks, and my mom can have her little netbook back.
Any last input on the whole computer issue would be appreciated - do you love what you have? Hate it? Wish you'd gone PC/Mac when you made your last purchase? Anybody?
1) Do I have enough brain power to learn a new operating system? Even though every Mac user I have talked to says that it's an incredibly intuitive OS, it's still not what I am used to, and will therefore require me to learn things. Thinking back, I know I taught myself DOS and, later, Windows (we had a computer before Windows - can you even imagine?) when I started using them, but I am not as smart as I used to be. I say this semi-jokingly, but it's true: brain fog is my real enemy now, in a way it didn't used to be, so that even things that should be simple wind up being unbearably complicated. So I have to really consider whether I have the energy to deal with learning a new thing. (This is a particularly important consideration when you're thinking about things breaking - when my PC stops running, I know of about 13 different ways to try to get it back up again... with a Mac, I'm clueless, and would probably make things much worse.)
2) How much money can I spend? Did you know that if you are on SSI, you can't have more than $2000 in the bank? Yeah - people with disabilities are apparently an exception to the whole needing to have money/plan for the future in anyway thing. (You can read a great rant about that on FWD, if I can find the link.) So I'm not allowed to have over $2000, and a 15 inch Mac starts at $1600. Which means, less taxes and whatever else, I would have about $300 to my name. Until April. I am not entirely comfortable with this, as I am generally "worst case scenario" prepared - I like to have the cash on hand. So I'm trying to figure out how to get the most bang for my buck.
There's a couple of other considerations... like I have no Mac programs, which, when it comes to photo editing, is kind of important; knowing your tools and how to use them. And then there's the fact that I need to make the RIGHT decision, or else beat myself up for all eternity. Blah. Choices - who needs them?
No, I need them, and I need to make this one - I hate being wishy washy, especially about something so trivial. But I think I kind of obsess about the more trivial things I can control, since there's no use obsessing about the stuff I can't control and would like to. BUT I'm going to set myself a deadline of this weekend, and see if I can do a last bit of research either tomorrow night (we're having a Lil Girl sleepover tonight, so that's out) or Friday morning before I finally get the damn CT scan for my sinuses (that the doc ordered 4 weeks ago - GROWL - and which will necessitate me making an actually important decision about whether or not to have the surgery - double growl.) And then my bank card will weep for a few weeks, and my mom can have her little netbook back.
Any last input on the whole computer issue would be appreciated - do you love what you have? Hate it? Wish you'd gone PC/Mac when you made your last purchase? Anybody?
Wednesday, February 24, 2010
Temporary pause
as the laptop has finally given up on me. Today's screen went from half pink to twitching to finally being blank. Although if I tilt it a certain way, I can see the vague impression of the screen behind the veil of black, so I know it's just the screen. But in the five years I have had this computer it has had to be sent away for repairs three times and I've had to use the Geek Squad twice. The battery's been replaced twice as well (which is not all that unusual), but I've also gone through 4 power cords, which is ridiculous. I could have bought a new laptop (plus) with what I've spent repairing the old one, and since one sister has been nice enough to offer up her store credit and another sister her employee discount card, I should be able to afford to get what I need/would like. Thankfully, Mum got a netbook from her sister for Christmas, so I can still do some research about what I'm going to get. So if you're wondering about the little bit light-ish (and picture-less) posting, not to mention the severely restricted blog browsing, that's what's up. Hope your week is going OK.
Wednesday, February 17, 2010
"I wanted to run away that day. But you can't run away from your own feet."*
One of the things I've always said about my particular battle with chronic illness is that - for me - it's like having all the downsides of being pregnant, without any of the benefits. When you talk to women about some of the worst side effects they encountered during their pregnancies, you hear a lot of talk about exhaustion (check) or their new aches and pains (check plus). I've known pregnant ladies who found that they were sensitive to odors (check plus), others whose favorite foods were no longer edible (check). There's the nausea (check), the heartburn (check), the weight gain (check), the loss of balance (check), the increase in number or intensity of headaches (check), the insomnia (check plus) and the resulting "mommy brain" (what I like to call brain fog) . I've got all those symptoms (plus bonus symptoms like a ridiculous lack of immune system & muscles weaker than wet noodles), only I don't get to have any of the fun that goes into making a baby or the fabulous new little person to care for afterwords.
For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.
I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.
So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.
Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.
Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.
And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.
I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.
And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.
*Cloudy with a Chance of Meatballs
For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.
I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.
So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.
Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.
Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.
And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.
I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.
And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.
*Cloudy with a Chance of Meatballs
Monday, February 15, 2010
Randomosity, of which I am good at
(Part of me is saying "I don't want this blog to turn into a bunch of whiny posts about how sick I am, especially when it's not really that sick, it's just average sick (for me) and who cares about that?" and another part of me is saying "Well, you've got to write something and what the hell else do you have to talk about?" The parts of me are almost never in agreement about anything, so I find it's probably the best choice to let them bicker and try to move on. In that spirit:)
Here's a very brief bit of an update -
I have been sinus infection sick for over a month now (making this the 14th straight month in a row that I have had either a throat or sinus infection), and, after a consult with yet another ENT, they (once again) think I should have some surgery. Sinus repaired, cyst removed, tonsils out, deviated septum fixed. The surgery is still a ?, for a few reasons, but it seems more and more likely as time moves on. I have a lot of reservations, (including how do I take my very necessary meds after a tonsilectomy; how are we going to keep my BP stabilized during the surgery; which doesn't even mention the fact that "10 days" of recovery time for normal people usually winds up being an exponent of that number for me), but I'm working through them while I wait for the next step, which is a CAT scan. I will keep you posted: when I know more, you'll know more.
In other news, I am searching for a new laptop, as this one (at only 5 years old) has been gradually making things more and more difficult for me. This past week, it's decided that it doesn't want to recognize the back-up hard drive unless it's plugged into a certain USB port. There are three USB ports, and every time I turn the thing on, it requires that I change it to a different one. This is marginally frustrating, but when you combine it with the semi-pixelated screen (from when Humpty and I took a tumble nearly two years ago), the fact that the power cord only works if it is turned at a 35 degree angle, and the fact that I have now spent more in repairing the damn thing than I would on buying a new computer, I have decided that I am going to start searching for a replacement in earnest.
Since I don't like A) Spending Money I Don't Have, B) Change, and C)Buying Things I don't Know A Lot About, you might guess that I am not entirely psyched about this proposition. You would be correct. Any recommendations would be greatly appreciated - what do you all use, and how do you like it?
My favorite part about my current HP is that it came with a controller, so I can listen to music at night and not have to move, but that's not a requirement in the new computer, since I could always just use this guy as a very big IPOD.
I also know that
Here's a very brief bit of an update -
I have been sinus infection sick for over a month now (making this the 14th straight month in a row that I have had either a throat or sinus infection), and, after a consult with yet another ENT, they (once again) think I should have some surgery. Sinus repaired, cyst removed, tonsils out, deviated septum fixed. The surgery is still a ?, for a few reasons, but it seems more and more likely as time moves on. I have a lot of reservations, (including how do I take my very necessary meds after a tonsilectomy; how are we going to keep my BP stabilized during the surgery; which doesn't even mention the fact that "10 days" of recovery time for normal people usually winds up being an exponent of that number for me), but I'm working through them while I wait for the next step, which is a CAT scan. I will keep you posted: when I know more, you'll know more.
In other news, I am searching for a new laptop, as this one (at only 5 years old) has been gradually making things more and more difficult for me. This past week, it's decided that it doesn't want to recognize the back-up hard drive unless it's plugged into a certain USB port. There are three USB ports, and every time I turn the thing on, it requires that I change it to a different one. This is marginally frustrating, but when you combine it with the semi-pixelated screen (from when Humpty and I took a tumble nearly two years ago), the fact that the power cord only works if it is turned at a 35 degree angle, and the fact that I have now spent more in repairing the damn thing than I would on buying a new computer, I have decided that I am going to start searching for a replacement in earnest.
Since I don't like A) Spending Money I Don't Have, B) Change, and C)Buying Things I don't Know A Lot About, you might guess that I am not entirely psyched about this proposition. You would be correct. Any recommendations would be greatly appreciated - what do you all use, and how do you like it?
My favorite part about my current HP is that it came with a controller, so I can listen to music at night and not have to move, but that's not a requirement in the new computer, since I could always just use this guy as a very big IPOD.
I also know that
- it is school vacation week here, so we should have the kiddos at some point, probably for sleepovers;
- my dad is back at work after a week's vacation and I definitely have to be better by the time he retires because (Him + Free Time) + (Me + Not Being Able to Do Anything + Extreme Sensitivity to All Smells, Especially Cooking Oil) = Bad News;
- SisterS is supposed to come down this weekend with BabyB and Oldest Nephew (which reminds me that I need new blog names for Youngest Nephew and BabyB) which is pretty awesome; and
- we're supposed to have some sort of engagment party/dinner thing for SisterCh and her fiance on Sunday, which I would be more excited about if his family wasn't coming, because thing I really know about his family is that the last time they were over, his mother wanted to take a bath in our bathtub. Really. It was very awkward.
Saturday, February 06, 2010
The end of the world?
It has not been my Best Week Ever.
Of course, it also has not been my Worst Week Ever, so there's always that.
I have acquired yet another sinus infection, which came as a surprise to even me, since I was so busy recovering from Monday's poking and prodding ("Oh look: she's super hyper-reflexive today, let's see if she keeps doing that if we keep hitting with this little hammer!") by the doctors that I didn't even recognize all the build up to the infection until my fever was raging and I was (TMI Upcoming: skip if eating) gagging on the post-nasal drip. By Wednesday, I was pretty sure that my sinus cavities had been packed as fully as they possibly could be, and by yesterday, I was seriously wondering why we ever stopped drilling holes in people's heads as a cure for things. I'm sure it would've cured what ailed me, at any rate.
Today is a slightly different story - less of the throwing up, more of the actually being able to inhale without crying, which is all for the better, in my opinion. Aside from completely missing the trash barrel 9.8 out of 10 times I threw a tissue in that general direction, I have also been reading a lot this week. The books have all been some of my past favorites, comfort reads from my personal library, which is totally my modus operandi when I'm sick: Old friends are better friends when it hurts to open your eyes and you have to roll over every 4 minutes so that whatever has infiltrated your head can slowly drip into the other side of your face. (And that's the answer I've been looking for, the one I should give when clueless people ask me why I keep all these books - "It's because something needs to keep my mind off of the fact that my brain is leaking out of my nose, ears and eyeballs, and I don't see you volunteering!")
Anyways, halfway through my second Nora Roberts trilogy yesterday, I realized that the books I was reading all seemed to have something in common: Everything I was reading had to do with the end of the world... or better yet, preventing the end of the world. Demons, vampires, gods, goddesses, ancient alien beings, epic warfare and battles filled with love and loss, blood and sacrifice. And the stories of people who are called upon to fight, even knowing that they're outnumbered, that the enemy is probably a lot stronger than them, that they might lose everything and everyone they care about.
Nothing like the end of the world to make the fact that 2/3 of the areas you use for breathing no longer function correctly seem like a minor detail.
In case you're interested, I started with her Circle trilogy, read Part I of Stephen King's It (if not my most favorite book ever, it's definitely in the top 3), and then worked my way through Nora's Blood Brothers trilogy (which is very reminiscent, at least to me, of It). I was going to read the fabulous post-apocalyptic Life as we knew it by Susan Beth Pfieffer next, but I'm still waiting for a copy of the sequel, so I think I'll see if I can't find some other sort of literary mayhem that appeals to me.
Of course, it also has not been my Worst Week Ever, so there's always that.
I have acquired yet another sinus infection, which came as a surprise to even me, since I was so busy recovering from Monday's poking and prodding ("Oh look: she's super hyper-reflexive today, let's see if she keeps doing that if we keep hitting with this little hammer!") by the doctors that I didn't even recognize all the build up to the infection until my fever was raging and I was (TMI Upcoming: skip if eating) gagging on the post-nasal drip. By Wednesday, I was pretty sure that my sinus cavities had been packed as fully as they possibly could be, and by yesterday, I was seriously wondering why we ever stopped drilling holes in people's heads as a cure for things. I'm sure it would've cured what ailed me, at any rate.
Today is a slightly different story - less of the throwing up, more of the actually being able to inhale without crying, which is all for the better, in my opinion. Aside from completely missing the trash barrel 9.8 out of 10 times I threw a tissue in that general direction, I have also been reading a lot this week. The books have all been some of my past favorites, comfort reads from my personal library, which is totally my modus operandi when I'm sick: Old friends are better friends when it hurts to open your eyes and you have to roll over every 4 minutes so that whatever has infiltrated your head can slowly drip into the other side of your face. (And that's the answer I've been looking for, the one I should give when clueless people ask me why I keep all these books - "It's because something needs to keep my mind off of the fact that my brain is leaking out of my nose, ears and eyeballs, and I don't see you volunteering!")
Anyways, halfway through my second Nora Roberts trilogy yesterday, I realized that the books I was reading all seemed to have something in common: Everything I was reading had to do with the end of the world... or better yet, preventing the end of the world. Demons, vampires, gods, goddesses, ancient alien beings, epic warfare and battles filled with love and loss, blood and sacrifice. And the stories of people who are called upon to fight, even knowing that they're outnumbered, that the enemy is probably a lot stronger than them, that they might lose everything and everyone they care about.
Nothing like the end of the world to make the fact that 2/3 of the areas you use for breathing no longer function correctly seem like a minor detail.
In case you're interested, I started with her Circle trilogy, read Part I of Stephen King's It (if not my most favorite book ever, it's definitely in the top 3), and then worked my way through Nora's Blood Brothers trilogy (which is very reminiscent, at least to me, of It). I was going to read the fabulous post-apocalyptic Life as we knew it by Susan Beth Pfieffer next, but I'm still waiting for a copy of the sequel, so I think I'll see if I can't find some other sort of literary mayhem that appeals to me.
Wednesday, February 03, 2010
"How does this finding change the world of Chronic Fatigue Syndrome?
Annette Whittemore
Number 1: It ends the debate. CFS is not, and never was, a psychological disorder. Those who are ill have always known this. The physicians who take care of them have always known this. And now, finally, those who have attempted to keep patients from receiving medical care for this disease know this. Number 2: This finding demands serious attention. Attention in the form of research funding. Just as our government has responded to the threat of HIV and other serious, emergent infectious agents, this finding demands significant and responsible action from our national health agencies. ... Patients deserve to know if they are infected, and to be offered effective treatments that will stop the progression of their disease. "
This past October saw (as is, by now old news around the CFIDS niche of the blogosphere), the publication of a study in Science that linked a recently found retrovirus - XMRV - to Chronic Fatigue Syndrome, Fibromyalgia and various other "neuro-immune diseases." The link was as strong as 90-96% of the CFIDS affected patients vs 4% of control subjects testing positive for XMRV. According to the Whittemore Peterson Institute (principal investigators), "The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections."
Of course, the study sampling was small (only 200 patients), and it did not prove causality vs. comorbidity. Also, although the retrovirus was detected, the researchers are still unable to say what, exactly, the XMRV infection means to those who are infected, so there is still a lot of work left to be done, but what it does mean is that there could soon be blood tests available for XMRV, and that treatment trials - including those of many already known and funded anti-viral medications - could follow soon after.
For the most part, I'm going to try to keep this post from being too personal, since that's what transformed my other drafts from being 'just a tad too long' to being 'too long to post because no one will ever trudge through all of that.' However, I do have to note here that being able to type that sentence, to include the words "treatment trials" and know what they would mean for my life, and for the lives of so many fellow CFIDS sufferers: Well, I just can't explain the kind of hope that gives me.
To say that this is the first, real leap of hope I've had in regards to my medical conditions in at least 6 years is to downplay how important this news could be for me. I've talked before about laying in the MRI tube, with its infernal clanking and banging, shot up with radioactive dyes and praying that this time, they just Find. Something. Anything. Just to know - just to have the answer, know the steps to follow, just to have some clue. It's not an impulse I am proud of - that there have been times I would rather know I was dying than have to live with the not knowing - but the impulse has been there all the same.
Dr. Peterson, CFSAC committee meetings, 10/29 & 10/30
"And so you can generate a hypothesis, much like the HIV hypothesis, is that you get an acute infection, you develop an antibody response, ultimately you have a failure of the immune system, and we postulate here that ultimately may be an NK cell numbers and function, resulting in very significant and prolonged disease. That is a model that could be fairly easily tested, and I think that that is something we should do rapidly and judiciously. "
There's also no small measure of joy in knowing that I might be able to prove my illness to people - to have my experience validated, not just by those who know or love me, or just by those who suffer the same ways I have, or just by the rare doctor who 'believes' what I am saying - but by every damn body. So that I won't have to be afraid if I require a trip to the emergency room, knowing that I won't be met with distrust and derision, that I won't be sent home in tears, or told to wait for the psychologist to come down and see me: that I would be treated as a person who is sick and needs care should be treated.
There's a lot of talk now about invisible disabilities (at least in the online communities I frequent), and I think that that is awesome, because there needs to be a lot of discussion about one of the most marginalized groups in our society. But something I think that often gets overlooked, is that within the medical profession, there is too often a divide between how they treat what they can see - even if it means that it's only visible in a blood test or a CAT scan - and what they can't - for example, things like chronic pain or mental illnesses. Even though I know that no proof should be required, I also know that in the real world, it still is.
Witness the ableism in this excerpt that justifies my experience even as it nullifies someone else's - From Reno Gazette Journal: "You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy," Mikovits said." At the exact same time that the XMRV findings were being released, I also came across these two pieces of research - The first was that the at a meeting of the "2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms." And the second is a study out of the Netherlands that discusses two commonly used "therapies" for CFIDS/ME - Cognitive Behavior Therapy and Graded Exercise Therapy - and concludes that "it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET." And yet, those are still recommended by the CDC and widely used as "treatments" - almost exclusively in some countries.
These are the attitudes patients have to contend with, in the real world - to be GRATEFUL that you are living with a deadly retrovirus, because otherwise people might not take you seriously; to know that any doctor you might go to could just tell you he doesn't "believe" in what you have; to get recommendations for treatments that are not only unproven, but incredible dangerous and potentially lethal - and to have no alternative treatments available to you.
As far as I am concerned, the least that has happened here is that this development has renewed the interest of scientists into these diseases that have gone too long ignored. Drug companies go where they know they can make money, and with the CDC estimating that CFS alone "affects more than one million people in the United States. There are tens of millions of people with similar fatiguing illnesses who do not fully meet the strict research definition of CFS," there is certainly profit to be made. From Medical News Today, November 09: "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man."
ME Action, Nov 09.
"Retroviruses like XMRV have also been shown to trigger latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS, according to a statement from the NIH. Dr William Schaffner, professor of infectious diseases at Vanderbilt University in Nashville, Tennessee, told the New York Times this was an exciting discovery that made sense and he suspects it will lead to an "avalanche of subsequent studies".
Reno Gazette Journal, (Nov 09)
"Judy Mikovits, the lead researcher in the study, said their findings also are being taken seriously by the rest of the scientific community."I've gotten more than 100 e-mails from physicians, and I've gotten calls from the head of the Mayo Clinic and the clinical director at Sloan-Kettering," she said. "Those people wouldn't take the time if they didn't think this was a significant finding."
Science Express, Oct. 09.
“Another notable feature of XMRV is that the frequency of infection in nondiseased controls is remarkably high...If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United States and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown”
So that's an overview of the XMRV findings, from my perspective: It's something to be cautiously hopeful about. I have a bunch of other quotes and thoughts to share, on a day when I can write more, but for today, I just wanted to leave you with this:
Hillary Johnson, "A Case of Chronic Denial" , NY Times, 10-21-09
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough."
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