"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

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

• 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.

So that's my news, and I also hope to be back before too long with a picture post, see if I can't scrabble a Best Shot for this Monday, get back into the swing of things again.

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.

"How does this finding change the world of Chronic Fatigue Syndrome?

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. "

Annette Whittemore

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.

"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. "

Dr. Peterson, CFSAC committee meetings, 10/29 & 10/30

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."

"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".

ME Action, 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."

Reno Gazette Journal, (Nov 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”

Science Express, Oct. 09.


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:

“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."

Hillary Johnson, "A Case of Chronic Denial" , NY Times, 10-21-09

Arrows are not complicated directional systems, people...

I started writing a post about my dad and the argument we got into yesterday, just because it's been bothering me all night, but then he came in and apologized, and we talked, and it felt wrong to post a big rant after that.

Instead: run-on sentences, just for you!

No, really... how about just the highlights of what's going on around here:

- Yesterday, we went to IKEA, which I went to mainly so I could spend some time with SisterJ, who has been spending time with us lately on the weekends, and it makes me smile when she does that. (Thank you, 5-hour energy!)

- IKEA is a gigantic, multilevel warehouse filled with furniture, a complex maze of arrows, and lots of great organizational things that I can't figure out because I am design-ally challenged. I went looking for a table, and came home with four little tiny glass jars.

- I hate IKEA. It took about 4 hours to get through the gigantic arrowed store, and buy those 4 little tiny jars. With (No longer)Youngest Nephew, who spent a great deal of his time varying between complaint and repeated requests that we not 'ditch' him... I have never ditched him in my life, but this store certainly made me consider it.

- Actually, I would've liked to just roll into one of those model rooms and close the door, but there were, sadly, no doors.

- And about 3000 people.

- Who apparently do not understand that you are supposed to go the way the arrow is pointing, not against it.

- I am never going to IKEA again.

- Tomorrow I have an appointment with Zach, that I rescheduled from December. I am sore enough today to know that tomorrow's appointment is going to be torture (always the touching: why must you touch?), but I have to go, because we have not even talked about XMRV or the results from my last round of tests and I do not feel like waiting anymore.

- This reminds me of two things: A) I still haven't written that XMRV post (which means I never sent the info to Janice either: sorry Janice! Brain = not smart) and B)Tomorrow is February.

- What the hell happened to January?

- Here is the only thing worth publishing from that ridiculous rant I wrote:

He's also a real sweetheart, possessed of a great gentleness and a sincerity that seems out of place in the here and now (He shovels the neighbors sidewalks, brings them extra food, and takes out the trash for the older woman behind us, because "it's what neighbors do"... Do neighbors still do that where you live? If it was left to me, I would not even know the neighbors' names.) I don't want you to think he's a monster: I don't think that. He's my dad, and I love him - he's lived with mostly women his whole life (think: 4 girls, my mom, and before that he lived with his ex-wife, and before that, his mother) but he's still clueless enough to think that "Do you have your period?" is an acceptable question; he gave me (and anyone else who ever walked into our house) a classic rock education (I think he was never more ashamed of me than when I got a Beatles question wrong on Trivial Pursuit); he's funny and affable, and, although he too often starts sentences with the phrase "Someday I won't be here anymore...", I don't know what I'll do if that day eventually arrives. I love him a lot, is what I'm saying.

How about you guys: How's your week looking?

It's like seeing inside my brain:

via Infinite Butterflies



Via Momentarily



Via FYAwesome

Blender brain! Update!

Last week was a strange week - Lil Girl stayed home sick (with a vicious cough), so as not to infect her infectious auntie; Dad stayed home sick, here, with pink eye or something, and wandered around the house a lot saying random things and aggravating me (perhaps unreasonably, but also: don't ask me the same question 17 times and expect me to be cheerful eversingletime!); and I couldn't see well for a large portion of the week, so reading and typing and watching tv and all those good distractable things that I count on were off the table, and my pain level was pretty high.

My pain seems to have platoughed, my eye is so much better now, and I even got to leave the house yesterday, which was a nice change of pace, as was a mostly cheerful SisterJ, who I miss when she's not here.

All of that backstory was supposed to lead into a meaningful blog post, but somewhere around the time that I started talking about my eye, I totally forgot what the point of the post was going to be.

So, let's just call it an update and call it a day, shall we?

See, I needent have worried

because Jon has me covered:

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
Mass Backwards
www.thedailyshow.com
Daily Show Full Episodes Political Humor Health Care Crisis

Robocalls are a stupid invention.

Have I mentioned before that I live in Massachusetts? I'm sure I have: I'm generally proud to be from this state - We're at the forefront on gay marriage, we beat the rest of the country to universal health care, and we've decided that R's are a completely unnecessary letter of the alphabet: what's not to love?

However, I would like, very much, not to be living in Massachusetts this week, as there is a big Senate race on right now, and the candidates - what with their commercials and 9 Robocalls a day and their constant bickering - are both driving me up a wall. Also, for some reason that is completely unclear to me, a Republican has a pretty good chance of winning Ted Kennedy's old seat. In a state where there are 3 registered Dems for every registered Republican, it boggles the mind. As Stephen Colbert said last week, this is definitely a sign of the coming Apocalypse...

And, of course, it gives us a prime opportunity to screw up the rest of the country, because if the Republican candidate wins, he'll be #41, thus blowing the Democrats' "super majority" (not that they've been able to accomplish anything with the super majority, but still). So goodbye health care bill: we've got ours, so the rest of you can just suck it. That seems like some great Massachusetts liberalism in play right there.

Anyways, I don't usually go off on political rants here, because, well, I have to defend my hippie-commie-liberal-pinko ways enough in person, so who wants to start something here, but I have to write something, because this kind of stuff makes me stressed out. I have to not listen to any of it, because attack ads (from my candidate, especially) and obviously, horrifically untrue statements (which I have to say have been more from the other side this time) make me want to throw up. It's like when I was younger and somebody would start picking on somebody else or my parents would start screaming at each other - it wasn't my fight, & you don't want draw attention to yourself, but you kind of wish you had the courage to just step in and say "Shut it! You're wrong, and you're mean, and there's no damn reason to be... Now play nice or walk away!" Play nice or walk away: why is that such a hard concept for people? Especially politicians? (And is it any wonder teaching kids to be nice to each other is something that attracted me so much?)

And also? Calling people 72 times in one weekend is not going to convince them that you understand their problems and will be there for them. It will convince them that you have no fricking clue what it means to be a human being, and that electing you is not their best decision. If you were smart, you'd start reading Facebook: more than half of my Massachusetts friends spent the day complaining about the calls they've gotten this weekend: either the number or the attitude of the callers themselves (pushy, much?)... I'd say every single status update today was either about the snow/ice or these calls. Ah: the phone rings again, I kid you not. And it's nearly 9 at night. I wish my eye was better and I could just read a book, shut off the whole rest of the world.

Let's see if I've unpacked my Firefly dvds, shall we?

I would tell any Massachusetts readers I have not to forget to vote tomorrow, but I think there's a slim chance of that happening.

I'm going to try to bribe my sister and her husband to vote, instead.

I lied...

about it being my last eye post. Sorry, but I thought I'd give you just a quick update: I have an infection on my cornea. It's a little bit abnormal, but the optometrist said it probably has something to do with my piece of crap immune system, and prescribed an eye drop I have to put in once every hour for the next few days, and then I go back on Monday. For my favorite-est of things: more eye drops (this time pretty colors - they make me cry yellow tears) and bright shiny lights directly into the very sore eyeball! Yay. Am wicked excited. But - today's drops have at least numbed my eye, so that I can talk to you nice people without turning the computer screen down so dim that I couldn't read it if I wanted to. Bonus.

Also, the optometrist seemed surprised that it had taken me so long to come in, which, I know ~ we've talked before about how, for me, having a strange-ass chronic illness (or multiple strange-ass chronic illnesses) makes it difficult to distinguish how real a problem actually is, but I have to say this fits right in there - it was something in my eye! Like an eyelash or something... How could that be a real problem? Everybody gets things in their eyes, and those things go away, right? And, ok, yes, I knew it was serious when it was still so sore a few days later, but that's why I bought the eye wash, and, when it didn't get better, that's when I called the doctor. I don't know: it seems reasonable both ways to me, even now. Who knows?

Anyways, the point is that ouch. My eye hurts. Especially when there is light, which is ALL THE FRIGGING TIME. My family grows more and more convinced that I am not really ill, but am, in fact evolving into a vampire. I am not entirely convinced that they are wrong.

It's been about a week and a half,

since I've been here, and I apologize for that.

But I think I'm going to skip the long explanations that explain nothing, really, and just say: my brain has been tired, and I have not felt like ordering it to work. Which is fine, really, except that all the posts I wrote in my tired head during the past week are now gone into the ether, and I have to come up with something to write because we all know the longer I go without posting, the harder it gets to post.

So, onto today's post:

Did you know that my most popular post, the post that gets the most comments and hits (at least one a day, I am not kidding you) is this one? 42 comments, as of today. Apparently, something I thought only I was careless enough to do (accidentally getting gel deodorant squirted into my eye) is pretty damn common. The number of people who find me after Googling "got deodorant in my eye" is very high... that search is, by far, my biggest referral.

I'm not entirely sure I'm happy to be known on the Internet as the girl who got deodorant in her eye, but I'm glad that I'm not the only one. I'm also happy to let people know that, while I have no medical training, and cannot guarantee anything, all of the people who searched and found me after getting deodorant in their eyes, at the very least, saw well enough to type. So, while it stings worse than shampoo or most other things you may have accidentally got in your eyeball (I will refrain from judgement here), it will probably get better relatively quickly. If I remember correctly, my eye was fine after a few hours, and only red for a day or so.

Not like this week, in which I did absolutely nothing whatsoever to my damn eye, and haven't been able to see clearly for three days. I also can't keep the eye open any length of time and have taken to wearing my sunglasses inside the house. Although today, I just shut off all sources of light - I am typing this on it's darkest setting, and occasionally peeking behind a piece of paper to check for misspellings - and confined myself to a dark room. Where I couldn't read or write or watch TV or any of the things I usually do to distract myself from my normal pain, so guess what kind of a week I have been having? (*And, oh, how this is its own post, readers: distraction as pain management technique, and how the loss of those distractions is like flaying yourself raw and then swimming in the ocean.)

I honestly have no idea what got in there, because it has felt like a little crumb of something is just under my eyelid, but I don't see anything. I thought about going to the doctor, but what do I say: "My eye hurts, but I don't know why?" I am giving it until tomorrow to straighten up, though... if it ain't better/improving by then, screw it, I'm calling. And then, of course, my eye got all red and weepy (sorry - disgusting, I know), and for whatever reason when my eye gets watery, my nose starts to run, and ALSO, the more I blow my nose, the more my face gets all broken out, so now my nose and one eye are all red, and I've got little cuts all over the place, so basically I look like I've been fighting with a very angry cat that I am also allergic to, or something. Tres attractive, I am sure.

On the plus side, I can't look in the mirror, because it hurts to open my eye, so there's that.

I think it was at it's worst this morning, though, because it hurt so bad I actually did something about it. I sent my dad to the store for some Visine (even though it gives me a rash on my skin, I would deal with that for an eye that functions), and he brought home an eye wash/eye cup thing instead. Have you ever had to do this? The directions are simple and straightforward - fill cup with solution, put cup on eye, tilt head back, OPEN EYE AND ROLL IT AROUND with the solution pouring right into it, empty cup, pat eye dry.

Simple, right?

Except that you are talking to the only person in the history of my optometrist to learn how to put contact lenses on by finally being allowed to do it without looking. I was in my 20s, and it took 3 lessons. Because the guy who was giving the lessons kept saying, "You have to look at your finger when you're putting it in your eye!" and "I have taught 4 year olds how to do this, now look at your finger!" That approach did not work for me, so finally I said to him, "How about if we try it this way?" and I looked in the opposite direction and snuck it in my eye while I wasn't looking and then blinked a few times: voila! Mission accomplished. (Off Topic - this is also the way I taught myself how to swallow pills: put food/drink in your mouth first, then slip the pill in, and act like it isn't there and just swallow your food/drink. Easy peasy.)

So the whole, open your eye and swish the water around in it, thing? Not my cup of tea. Basically I wound up having to tip my head back, and then blink really fast for as long as I could. What? It seems to have helped, so why knock it?

My eye is still puffy and red and hurting, but it's getting better, I think.

This concludes my second - and hopefully last post about stuff getting in my eye (and if I ever figure out what it was this time, trust me that I will avoid that substance like the eye plague it truly is). Enjoy the rest of your day, and I'll try and come up with something less gross for tomorrow's post.

"Feelings of worth can flourish only in an atmosphere where individual differences are appreciated, mistakes are tolerated, communication is open,

and rules are flexible -- the kind of atmosphere that is found in a nurturing family." - Virginia Satir


If you've been here for a while, then you know that I don't do New Year's Resolutions. I never really did, because I know how my brain works: I spend a lot of time coming up with resolutions, figuring out ways to accomplish them, figuring out ways to avoid accomplishing them, and then feeling guilty about breaking them. It's a vicious cycle that takes place approximately 742 times throughout the year, so I don't need an extra, mandatory date to create issues for myself.

Instead, taking a cue from Spoon Theory creator Christine Miserando, I pick one word that I try to focus on over the course of the year.

In 2008, the word was closer.
Last year, even though I didn't declare it here, the word I kept coming back to was breathe, especially since the year started off with us not knowing where we were going to be living, and then I spent 4.5 months in limbo at my Grandmother's house. Reminding myself - when I felt like I was accomplishing nothing, or that I was wasting time - that all that was absolutely required of me was breathing in and out, was a great help.

This year, I've put a lot of thought into a word that actually A) means something and B) will be easily applied (see cycle of resolutions above if you were wondering why it has to be simple). Some of the contenders were Truth, Choice, and Balance, all of which were good, but none of which seemed to be the perfect choice.

The word I came up with is Worth.

Looking at the definition of worth, I was pleased to see its roots are from Middle English, meaning to "become". Nowadays, it means the quality of something, the value of it. Something's equivalent. Something that is "good or important enough to justify" ie "advice worth taking; a place worth visiting". It can mean "excellence of character" or the esteem it deserves/garners, its "usefulness or importance". It's not just about monetary or material riches, but wealth of a different sort as well.


This year I'm going to focus on what things are worth, in a real and honest way. I'm going to think about what things are equal to, where excellence is actually found, and whether or not I'm truly valuing that excellence.

I need to be honest in ascribing worth - to things (Am I holding on to junk? Am I stockpiling things instead of valuing what I already have?); to people (Is it really worth another argument? Am I giving certain relationships their due or shortchanging them?); to time (What am I really spending time on vs what I want to spend time on. What is my time worth to me - and how can I show other people it's value?); to everyday actions (Is the taste of what I am eating worth the consequences for eating it? Is staying up all night typing the best way to be worth something in the morning? Since I know I won't take my pills regularly if I don't fill in those little days, isn't it worth it to fill in those little days even though I hate that job?); to the type of person I am trying to be (Am I trustworthy? Am I worth the effort it requires to be my friend? Am I sharing the true me with people who have proven worthy, or am I holding back?)... There are a million areas I need to look at in my life, a million places I could be putting what little energy I have to better use. So I'm going to try to be constantly asking myself... Is this worth it? What is this worth?

I think that living with chronic illnesses is all about asking this question - that there's so often a give and take, that there are so many reactions for every action. And, after a certain point, it gets overwhelming. It's scary, having to think every little thing through. It's frightening not knowing what the consequences for certain things will be. But that's not just living with a chronic illness, that's living. Period. So I have to stop being so passive about certain things, I have to start accepting the fact that the way I live - in the here and now, and the day to day - is my life, and I want to be doing as much of the choosing as I possibly can. So I need to start deciding what things are worth, what I am worth and how I can be more worthy.

It's funny, because I find that these keywords, or themes, or whatever you want to call them tend to stick with me. I still find myself asking "Does this bring me closer to my goals?" "Am I remembering to breathe?" has become almost a motto at this point. So I hope that focusing on the worth of my efforts & actions will become second nature to me by this time next year.

That seems as good a goal as any.

------------------------------------
Definitions for worth via Merriam Webster dictionary & Dictionary.com

I just saw this post by one of my favorite bloggers, and even though I have a very small blog audience, and because I know all of you have big hearts, I thought I'd share it with you.

Hi Brandy! I am a long-time mostly lurker, and I wish we were getting to know each other under better circumstances. Please know that I am not much of a prayer, but I definitely know how to keep people in my head and heart, and hope that it helps them. And now you and your totally awesome internet guy are on my list, so I've got my fingers crossed for you.


My name is brandy. And I have a blog.

And a plea.

I use my blog to showcase the crazy I meet everyday, share the stories of the kids I teach and document my love for tequila, dairy products and the abdominal muscles of Ryan Reynolds. Rarely do I talk about personal issues on my blog- as personal as the dude that I adore (who I actually met through my blog- single ladies, let that be a very good reason to blog, the possibility of meeting someone as wonderful as my man), but I need your help. And it involves my dude.

He's a guy who made math comics for my class, so they would love learning about addition. He's the kinda guy who sends my friends gift cards when they are having hard times, who remembers every story I ever told him, who was the first person I celebrated with when I got a teaching job. He's the guy who sent flowers to me at school- dozens of my favourite pink roses just because he loves me. He's a guy who has spent a year patiently explaining (and re-explaining) everything there is to know about football during the important games when silence is preferred. He's made me word puzzles and comics and stayed up late playing Scrabble with me (even though I beat him almost every time). He's listened to me cry about school and family and jobs. He is everything I never knew I needed and everything I always knew I wanted.

The holidays have hit us hard. He's recently been told he may have something called multiple myeloma- an incurable cancer, that gives a person an average of five years of continued life. Though this news has came as a shock, he continues to be exactly who has always been- spending his time worrying about me, rather than worrying about himself. He's the most selfless individual I know- (he stayed late on Christmas Eve to work, so his co-workers could leave early) and a post like this would never be something that he would promote or encourage but when I'm overwhelmed and feeling helpless, the blogging community has always given me tremendous support and comfort, two things I desperately need at this time.

As I write this, the future is uncertain and we aren't sure what's happening. He'll need to see an oncologist soon, to verify what's going on in his body. My hope is that everyone who reads this think positive thoughts and if you are a person who prays, could you add him to your list? (You can refer to him as 'brandy's hot awesome dude'). If you don't pray, please keep him in your heart. This cancer is only a possibility and I believe that the prayers and positive thoughts of people can make sure it never becomes a reality.

I want to give a big thank you to the blog owner who scraped their original blog plans and graciously put this up. My goal is to get as many people as possible to see and read this post. If you are reading this and want to help, copy and paste my plea into your blog or send a link through twitter, so more people can keep him in their thoughts. I would be so very grateful (even more grateful than I am to my friend who first showed me the picture of Ryan Reynolds on the cover of Entertainment Weekly. If you haven't seen it, google it. You. Are. Welcome).

I realize this all sounds dramatic, a Lifetime movie in the making- but this is life. Right now. And I'm throwing away any hint of ego and am humbly asking for you to pray or think kind thoughts. If you are able to pass this on, thank you and if you know anything regarding MM- please email me (my email is on my blog). This isn't a call for sympathy or a plea for pity. It's just one girl hoping you can think positive thoughts for the person she adores. If my current heartache provides you with anything, let it be with the reminder that life is short, love is unbending and no one knows what could happen next. Maybe it is silly, but I really do believe that positive thoughts can make a huge difference. Thank you for reading this and if you haven't already? Please tell someone you love them today.

I did.

It will come as no surprise

to anybody that I am sick.

I was going to say "really, really sick", but I think I could knock it down to just one "really" at this point, because I am fever free(ish), and that is usually a turning point for me.

Just like last year, I went and got myself sick right after Christmas. Actually, this year, it's been a little bit different for a few reasons (like the fact that I am actually writing this while it is still December, rather than the middle of January), but basically, it went like this:

1. I realized I was getting sick as we were going through the frenzy of last week's Christmas preparations, and I started taking my back up antibiotics as soon as that happened.
   
2. Unfortunately, I still had a million and a half cookies to bake, and a sick Lil Girl to entertain, and Mum who was sick (and had left all her Xmas shopping til the last minute as usual), and therefore I had to do things like manage to get my own food and essentials like that, and so I couldn't really just rest and try to head things off as much as I might like to have.
3. On Christmas, I wore myself out even more. Mostly having fun, although there was some managing of things that I really should've just let go mixed in there too. But still, mostly having fun.
   
4. By dessert time on Christmas day, my throat was scratchy, my head was stuffy, and I knew I was getting a fever. I started coughing, but everybody was coughing, so no big deal, right?
5. Wrong. Big deal. By three in the morning, after everyone has finally given up on the Beatles Band Hero, and either gone home or gone to bed, I knew I was in serious trouble. I was having trouble breathing, my throat was so swollen; I could barely move because of the damn fever; and Imight be wrong, but I think someone must have transformed my room into a sauna as a surprise Christmas present for me.
   
6. Saturday and Sunday disappeared into a fevered fog. I have vague recollections of chills so violent I required four blankets (which all hurt: thanks FM!) & two heating pads, and the fact that there seemed to be an endless cycle of having to drink, having to get up to pee, and crying because it hurt so bad. I gave up on watching movies, and spent a lot of time staring into the window lights for no damn reason except that I couldn't think enough to realize that I knew how to shut them off.
   
7. Monday morning, the fever broke and has been mostly gone since then, which means I was able to rewatch (and actually understand this time) Harry Potter and The Half Blood Prince (awesome), and the antibiotics finally start to kick in so that I was finally able to swallow something other than soup.
8. "Eating" nothing but soup for three days does not agree with my stomach. My stomach decided to make its disagreement well known.
   
9. Yesterday, I finally got in the shower, and Mum changed my disgusting sheets, and after that I felt vaguely human again. Brain power started slowly coming back, and I remembered things I am supposed to stay connected to like my sister's mother-in-law's surgery and my cousin's ultrasound results.
   
10. We finally get to today, where I feel halfway decent (for me), and have gone from sounding like a cigar-smoking Darth Vadar to just a cigar-smoking frog. The hacking cough is lighter and less croup-y, and my tonsils are back on their own sides of my throat.
    

While this is hopeful, and I'm glad the antibiotics are really working this time, I would really just like to not catch every damn thing. Next year, I'm making the cookie dough in August, and freezing it all. And I'm going to start shopping now, because I can not let myself get so run down. And it pisses me off that 15 years into this damn disease, I still haven't managed to set - and keep - the limits that I need to in order to help myself stay healthy. Which isn't to say that I wouldn't have caught it anyways - Lil Girl, Mum, (not) Youngest Nephew, & his dad are all/have all been sick either this week or last week, so it's not just me of the ruined immune system, but I know that there are ways to protect myself more, and I hate that I let my guard down in that area when things get stressed. Because these damn infections are starting to get more and more serious, and I am not going back to the hospital if I can help it at all.

So, now onto step 11: rest, rest, Guitar Hero, rest, eat real food, watch crappy TV, more rest. Join me, why don't you?

Merry Christmas

Hope you are all where you wish to be this Christmas. And with people who matter to you. Just thought you should know you matter to me.

Merry Christmas!

Yesterday was a day lost to smells - between the gasoline for the snow blower, and my dad deciding to burn orange peels, I spent the day battling both nausea and a migraine, and accomplished nothing. I can't afford lost days during normal times of the year, but at this point, I was so angry about the whole situation, my dad was pretty lucky that I was immobile & non-communicative. He just doesn't think, or, even worse, he doesn't ask, and I'm beyond frustrated with the whole damn situation. But that was yesterday. Moving on.

Thankfully, today I am feeling a little bit better, with just a hangover kind of headache. The pukiness has dialed wayy down, which is lucky because I have to make about 65 batches of cookies today. :) I love baking, and I've been looking forward to this, so I'm not going to let yesterday spoil my mood. It's a new day, and I'm amping up my Christmas spirit.

To help with that, I thought I'd share the kids' Santa picture as My Best Shot for this Monday. If you're one of my once-a-week type visitors, let me just wish you the happiest of holidays while I have the chance. Hope the snow hasn't messed too much with your plans.



As always, don't forget to head over to Tracey's, because the Best Shots are one of my favorite parts of the week.

We're still waiting for the snow to start here,

but we're all safely wherever we are supposed to be, so I'm definitely in the "Let it snow, let it snow, let it snow!" crowd. I tend to disbelieve the weather guys - as more often than not their predicted amounts are not even close - but right now they're still saying 8-15 inches in our area, although they're leaning toward the smaller amount closest to us. We shall see.

If you're buried under the snow, use it to your advantage: bake some cookies, watch some Christmas movies, wrap some presents.

That's what I'm going to try to do.

-------------------------------------

I'm sorry for the light posting - I think this must be part of the reason I do NaBloPoMo every year: so that I won't feel so guilty when I can't post all the time in December. I've been sick (shocker); Mum's been sick (so that I have to try to do more for myself); my brother and sister-in-law have been disagreeing (and dragging me into it); and our newest addition added a good 7 hours of (totally worth it) travel to my plans last weekend (which I am still kind of recuperating from). So: it's been a lot, I'm trying to cope with stress in positive ways, but I'm not really sure that I'm accomplishing that. (Fact: if my dad turns the heat down one more time, I might lock him out on the porch. Those are good coping skills, right?) I hate not writing, though, because then I get all clogged up in my head, and my mood suffers. So I'm going to try to be better this week about saying things here, so that certain members of my family don't have to go buy tents.

Deep breath. New day. Off to wait for the snow.

My goodness

have I had a busy weekend: a 2nd birthday party for my cousin's twins on Saturday (about an hour away), and then yesterday, instead of getting our Christmas tree, we got my newest nephew instead!

Here he is SisterS's new baby, BabyB ... it'll have to do for now: Poor Youngest Nephew is going to need a new name too, but I'm too brain-fogged to think of a good name for either of them today, so ... settle for a picture?




I thought so. Here's our newest addition. I'm now an auntie to four great kids: How did that happen? (And, literally, this is less than half of my siblings... I could be in big trouble, eventually.)

Have a great week, everybody, and don't forget to head over to MBSM.

I took a couple of days off

from posting. I was in a mood/trying to get things accomplished in real life/fighting off a cold/sick of my own voice/frustrated with the entire world/take your pick. I am still most of those things, come to think of it.
I had to reschedule my appointment with Zack that was supposed to be on Wednesday (now it's February 1st... sigh) because of snow and a car that won't work, and feeling generally like crap (but not crappy enough to necesitate seeing him immediately), and I am disappointed about rescheduling it because I really wanted to talk to him. I am getting some Christmas shopping done online, but not enough. I am getting some decorating done, but, again, not enough.

And I know I am the only one putting all this pressure on myself, and that makes me even more frustrated.

I like to give myself all this credit for all of the adaptations I make in order to live with my illnesses, and I talk a good game about how you have to listen to your body and know your limits, but sometimes I can't help but be my own worst enemy. Christmas time - with it's clump of surrounding birthdays and all the 'essentials' of the season - seems to erase all of my logical decision making skills.

Should I work for 10 hours straight on scrapbook pages, because it is too much work to clean off my bed and then take it all out again? Of course I should! Should I volunteer to make something else for somebody, even though I haven't finished the 12 other projects I've got going? Of course I should! Is it ok if the kids sleep over from now until Christmas? Of course it is! Should I add another pie, and two more types of cookies to the list of things I want to bake next week? Definitely! Should I go to the mall, with all the germy people? Should I forget to eat and take my pills because I am too busy? Should I drop everything because someone else needs me to do something else I hadn't planned on doing? Absolutely, without a doubt!


Sorry for the grouchiness... I'm definitely not a Grinch, as Christmas makes me feel warm and fuzzy. It's more that I need to realize I can't do all of the things I want to do, and I need to cut myself some slack on letting things go.
Should I just wrap myself up in the fuzzy blanket, have a cup of hot chocolate, and try to take a nap? Now that's a pressure I can cave under.

Mission Accomplished

Tomorrow, let's try adding something like 4) Accomplish some damn thing or another, why don't we?

November has come and gone,

and I didn't publish either of the two posts I promised: The Oracle/abilism post I've been writing since Halloween just still seems like a first draft (even though it is actually my third), and the XMRV post has ballooned into something that looks like 5 posts, with additional information coming in everyday. So I apologize for that - I am still hoping to get them both posted relatively soon. In the meantime, I am kind of* excited about decorating the new house for Christmas; I've gotten a few bits and pieces of shopping done; and I'm eagerly waiting our newest arrival (SisterS is due 9 days!), even if he is going to live too far away for me to regularly snuggle.

Do you have your December planned to the hilt, or are you taking it as it comes?




*"Kind of" because I am also exhausted and still flaring, and it seems that this flare I was worried about back in September has really decided to settle in here for a while. I also love how it takes me three months to declare myself actually worse, even though it was true from that first day... blah.

We made it (again!)

Yay!

Recovering from a physically hard but emotionally happy weekend, and so, for today's post, you get this:

Bring on December! (Holy crap, it's December!)

One more day to post,

and there was more than one day I didn't think I'd make it, but here we are. I'll check back with you tomorrow! (Remind me that I absolutely posatutely do not want to try NaNo Writing Month next year, like I thought I might. No. Maybe in April, but definitely not in November. The End.)

Pie for breakfast is healthy, right?

So, Thanksgiving was fabulous here (Until I sort-of passed out, while trying not to pass out, and thought I was being really discreet and all, but everybody started getting up and leaving. Oops.) ~ I hope it was fabulous for all of you too (minus the passing out part).

I am recuperating slowly, which means leaving bed only for necessities, and checking e-mail only for short periods of time that my fever is down and my brain is functioning, but today is so much better than yesterday that I just wanted to check in and say that I hope you are all having a great, restful, thankful weekend.

Be back manana (in one form or another).

Be As Well As Possible.

In anticipation

of needing some rest: Happy Black Friday, all!

Happy Turkey Day!

After we built (tore down and rebuilt) a block city today, Lil Girl and I threw our own Thanksgiving Parade. Using all of the little people, birthday cake characters, and happy meal toys from our various childhoods (there's been a kid around here continuously since 1976), we wound up with a Sesame Street float, a Lion King float, a Lil Mermaid float, a bunch of clowns, a Bambi float, about 6 other Disney themed floats and had Woody from Toy Story leading the whole thing. Block City residents really seemed to enjoy, as did she and I. Afterwards, Lil Girl decided to invite every single float, wrangler and character back to the main house for Thanksgiving dinner. Here's hoping that your Thanksgiving has a few less participants, so that you don't have to rebuild your house (again) to fit them all in.

Today is pie day

and I have just two things to say -

1_ Baking pies is a LOT easier with a stove that works. *I will try to take pictures before they get eaten tomorrow.

and

2_I am in need of a hot shower and a warm bed.


Happy Thanksgiving Eve, peoples. Wish you all the best tomorrow.

Dear TV

I have never "wondered who grew my soup*".


On the other hand, thank you, Bravo, for starting the West Wing over from the beginning. :Sigh: I miss the Bartlett White House.

Fox: just so you know, I know that your American Idol previews are going to be better than the actual season of American Idol, so I don't mind that you're playing them already.

Also, bring on the Christmas specials everysinglestationever, because I have a DVR and will watch them next week, when I am feeling the Christmas spirit. Why aren't there any Thanksgiving specials, btw? May I suggest Planes, Trains, & Automobiles? Those Aren't Pillows!"

Carry on.

Sincerely, NTE


* Campbell's Soup commercial;

had a sleepover this weekend

with this boy:



We had a great time, and played enough card games to make up for the weeks since we've been able to play. We played War and Fish and Bullshit (which, for age appropriate reasons, we call I doubt it!) and BlackJack and Poker. This boy is a bluffer, for sure, and I don't know where he gets it from, because I am the one who taught him to play, and I apparently suck at bluffing (at least, that's what my family says). He also likes to go "All IN!" while I prefer to wager discreetly and sneak up on people when I have a pile large enough to knock them out. But we had a lot of fun, regardless of our different playing styles.

At one point he was laughing so hard that he passed gas and, of course, because he's a 9 year old boy, started laughing even harder. When he finally stopped giggling, he said "Excuse me: I must have laughing gas." If you don't think that started another wave of laughter, then you don't know me at all.

Don't forget to check out all the the other MBSM, where Tracey has asked us to share our heart. This boy is certainly a large piece of mine. Happy Thanksgiving to all my (mostly) Monday readers - Hope you have a great week!

Sunday night

came awfully quickly: Hope you had a great weekend, and (if you're in the US), that you've got your Thanksgiving plans in order!

I always get about this far into NaBloPoMo, and wonder what the heck I was thinking: there's sleepovers and Thanksgiving and pies to make; there's birthdays to scrap for and Christmas presents to scout out; there's doctor's appointments and relapses and every single germ in creation headed straight for me. In other words, November is not exactly a stress free month - for any of us.

But then I remember that coercing myself to write everyday reminds me that I have a connection to people who don't just exist within 65 miles of my physical self. It reinforces the idea that there are other people like me, who are just trying to make it through their days, and we're all helping each other out. It forces me to think of something to talk about, allowing for the instances when all I have to talk about is how sucky something has been & promoting instances when glorious things occur. It gives me something to look back on with pride and accomplishment at having met a goal and overcome obstacles.

So here's to another day down, and 9 days to go.

I am home again

(home again, jiggety jog). It was a relatively minor issue, which, as usual turns into something bigger because I am me. Whatever. I am over it. Back home with the heating pads, whatever virus Lil Girl managed to wipe on me (she sneezed into my shirt the other day, instead of her own, and while I know that didn't make me sick, I doubt it made me any better either), and more DVR-ed West Wings, Offices, and last night's Daily Show & Colbert Report... Then I'm going to take the hottest shower ever and zone out. We have a shiny new stove that I get to make pies in next week, and that is happiness making, indeed.

That's my update, What's cooking for you guys?

NaBloPoMo

Just made it... am relegated to the pull out couch of death again, because new stove = gas pipe = smell... back tomorrow!

Stepped in it this time

Today I managed to start a big family brou ha ha, which only reminds me why I try not to talk to people and makes me wish I lived in one of those hibernation caves you hear so much about. (Minus the bears.) Long story short(ish) - my grandmother, uncle and littlest sister weren't going to come for Thanksgiving, only littlest sister (SisterK) didn't know that. When I told her, her response was "Why do they hate happiness?" and then she called them and asked them what was up. 5 phone calls, (at least) 3 sets of hurt feelings, and one "let's not let this shadow the holiday" later, they're coming for Thanksgiving. And they'll be happy (ish) about it!

No, seriously: I have no idea how things went off the rails in regards to that whole discussion, but they went waaaay off the rails, and just blah. I know we are champion avoiders, so it will all be forgotten(ish) and never discussed again, but in the meantime, it's just too much drama. The kind of thing I have labeled (in my head) Llama Drama, because it is just so unnecessary, and everything in my life must somehow be related to a book, even if, in most instances, it's a picture book.

After all the Llama Drama, I just want to never answer the phone (and I wasn't too keen on it before all this), but I will have to, I suppose. In the meantime, I'm going to watch the cast of Nine on Oprah and hope for some rousing musical numbers ("Be Italian happens to be one of my favorites, because it is so, totally my dad).

"And Max, the king of all wild things, was lonely and wanted to be where someone loved him best of all"

Yes: this -

WANTED: A partner for richer or poorer and for better or worse and absolutely, positively in sickness and in health. A partner for fishing and French food and beach walks and kayak trips, but also for phone calls from physicians with biopsy results. A guy who knows that while much of marriage is a 50-50 give-and-take, sometimes it’s more like 80-20, and that’s OK, even when the 80-20 phase goes on and on. A man who truly doesn’t care what somebody’s breast looks like after cancer surgery, or at least will never reveal that he’s given it a moment’s thought. A guy who’s got some comfort level with secretions and knows the value of a cool, damp washcloth. A partner who knows to remove the computer mouse from a woman’s hand when she types phrases like “breast cancer death sentence” in a Google search. And, most of all, a partner who will sit in a cancer clinic waiting room and hold hard onto the purse on his lap

Because, also? This -

"What did it feel like, I wondered, to be kissed like that right out in public? Not like some passionate tongue-wrestling thing, just a kiss to declare: We are each other’s. I’d never been kissed like that. No one had declared me his, not for the whole world to see, anyway." - Story Of A Girl

and this

“He wished he knew the name of the gods who’d looked down on him the day he’d met her. If he could stack everything he owned, had done, had accomplished, on one side of a scale, it still wouldn’t out-weight the gift of her.” - Memory In Death

(and, if you want to read more about "Real/Everyday/99%/Omega/Sandwich Heroes" check out this Smart Bitches thread.)

I know these guys exist ~> I'm lucky enough to have some examples in a few friends and family members, so I know it's not too much to wish for; someone who loves you best. (I just worry if it's feasible for me, but I guess everybody does.)

Except for the punching, some pretty good advice.

Just can't get it together again here, people: My Best Shot Monday photo is stuck in my camera, and my energy is nil. So I decided to give you some of the most recent quotes that have caught my attention & go back to the West Wing marathon my DVR so kindly saved for me.

“If exhaustion were a tangible object, something you could point to and say, "Look, there's my tiredness," mine would have it's own orbit. It would glow red in the night sky and be feared by villagers and prophets alike. Virgins, no doubt, would be sacrificed to it.”

From “Looky, Daddy” blog

"The only real way to get at how much real pain a person is in is to ask them and trust them. The danger of not believing people is much greater than the danger of overprescribing opioids. The big challenge we have is educating medical doctors. Politicians are even harder, but medical doctors are also thick as bricks." .

Jeffrey Mogil, PhD; From O Magazine, April 2009

"I ate a lot of widower food: peanut butter sandwiches, cereal, frozen steak burritos. I heated the burritos in the oven and if they didn't come out thoroughly defrosted I said, Hell, what's the difference, and crunched through the frost. The hungry feeling and the lonely feeling merged until it was hard to tell them apart. I stopped cooking. Couldn't stand the idea of it. Who would eat it? Who would notice? Who would care? ... But there's still hunger. The sun goes down and there are quick decisions to make."

Love is a mix tape; Life and loss , One Song at a time by Rob Sheffield

Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful.

-- Buddha

The to-read pile is more than just a physical stack of books: it's a tower of ambitions failed, hopes unrealised, good intentions unfulfilled. Worse still, it's a cold hard reminder of mortality. Already, I have intentions to read more books than I can hope to manage in a normal lifetime. How will this pile of books taunt me when I'm 64?"

Perils of the TBR

Everyone, at some point in their lives, wakes up in the middle of the night with the feeling that they are all alone in the world, and that nobody loves them now and that nobody will ever love them, and that they will never have a decent night’s sleep again and will spend their lives wandering blearily around a loveless landscape, hoping desperately that their circumstances will improve, but suspecting, in their heart of hearts, that they will remain unloved forever. The best thing to do in these circumstances is to wake somebody else up, so that they can feel this way, too.

- Lemony Snicket

In the Schrute family we believe in a five-fingered intervention. [raises fist] Awareness. Education. Control. Acceptance. And punching.

— Dwight Schrute, The Office

Ah, to be this organized...

Not feeling better today, so please enjoy pictures of bookcases - not ours, unfortunately, as the not feeling better has extended to still not getting the books any further than random piles on the floor - but ones from various tumblrs and whatnot. Bookcases... drool.

Via the blog on the bookshelf




Via FYReading

Via Infinite Butterflies

Check back tomorrow for things that make sense

I dared to venture out of the house last night, and am definitely paying for it today. I am lucky enough to hear things like "You look like you are hungover" without ever getting to experience the being fun (?) of actually drinking. Headaches, dry heaves, body aches, noises that are too noisy, lights that are too bright ~ just my normal recuperation period, basically. It was nice to be out - seeing my sisters while wearing something other than my pajamas; getting bubbles blown at us by the famous (probably only in Cambridge) Bubble Lady; embarrassing SisterK by having the waiters attempt to sing Happy Birthday (wow, they did such a bad job) - but it sucks to have to pay for it. To realize that (most likely due to whatever bug I am still trying to fight off already) the hours out/suffering afterwards ratio is definitely not tipping in my favor. Oh well: what's done is done, and we almost wound up with a leprechaun's jacket, so it was worth it.

Oh, also: I am so glad that you all liked the MILAs ~ I could spend forever reading those! I know they basically show that I am a big geek, since more than half of the ones I save are related to Harry Potter or things like that, but if you spend any time here, you already know that anyways. :)

Average Lives

All of these amusing little anecdotes are recent postings from My Life Is Average (which I have been calling "My Life Is Awesome", simply because it seems much more apt). If you haven't been over there, you should check it out - these are just a few of my favorites lately, but there are about 50 new posts a day, and there's usually 2 or 3 that give me a little chuckle. Enjoy yourself flipping through them... but beware: Time Suck Major!


Today, my liitle sister was playing barbies in her room. When I walked by all I heard was "First, my ninja barbies, we are going to destroy Hannah Montana and her awful music, and then we will take over the world!" I don't know whether to be terrified or extremely proud. MLIA

Today, while in my mother's 2nd grade classroom, I was looking at the bulletin board. It read "Believe in Yourself" and each student had to write one goal they wanted to achieve down. While most kids wrote "i can run faster" or "i can reach my reading goal", one child put down "i can hug a penguin". MLIA

Today, my sister and I turned our yard into the Godric's Hollow cemetery. We made headstones for all the important characters that had died in the Harry Potter books and played music from the Harry Potter soundtracks. Tonight, when I opened my front door to greet some trick-or-treaters, a young Harry Potter was weeping by his parents' gravestone in my front yard. I gave him the rest of the candy. MLIA

Today I dressed up as Gandalf and went to work. I was late. When I walked in my boss said "you're late", to which I replied "a wizard is never late, nor is he early. He arrives precisely when he means to." I didn't get in trouble. MLIA.

Today, I was in a large corn maze and began to be bored. To change this, I decided to yell "Marco!" at the top of my lungs. Off in the distance, I heard a single person yell "Polo!" back equally as loud. We continued for an hour and a half until I found her. We now have a date set up for tomorrow. MLIA.

Today, I was was at work (I teach kindergarten) when I noticed a little boy trying to steal a girl's barbie doll. I was about to go break up the argument when the girl yelled "Swiper no swiping!" the boy yelled "OH MAN" and walked off. Thank you Dora for teaching kids proper self defense.

Today, I was walking around school and I noticed a blue paw print taped to the wall. Intrigued, I removed it and looked around for the culprit. A student in a large blue dog costume peered around the corner, put a finger to his lips and promptly disappeared. I have never been more confused and excited in my life. MLIA

Today, it was our Year 12 Assembly, where everyone dresses up and we run the assembly ourselves for the rest of the school. One of my friends dressed up as the Mad Hatter from Alice in Wonderland, and during the Principal's speech to us, he yelled out "CHANGE PLACES!!!" 1500 students got up and ran to a different seat, and the Principal continued with his speech and acted nothing happened. MLIA

Today, I realized that the Clapper does not only respond to clapping, it also responds to any exceptionally loud noise. It may be a bit noisy around here, now, but lights come on when I scream 'Lumos!' and that's all that matters. MLIA

Today, during SSR (silent sustained reading), I pulled out a book by Dr. Suess and began to read. Apparently the cute guy next to me was reading over my shoulder, because at the end of the book, he sighed and said to me, "I love happy endings." I'm in love. MLIA

Today, my friends and I were walking down the hall in a straight line across when one of my friends stopped and rearranged the order we were walking in. I didn't realize what he was doing until I noticed that our shirts were now in rainbow order. We're best friends for this reason. MLIA.



These are SO my people.

Well, today is Thursday (as opposed to Tuesday, when I just thought it was), but I don't get my four days off: we have Lil Girl tonight for a sleepover (her first in a very long time) because her other grandmother has to have day surgery tomorrow, and we're helping out. Of course, I'm also supposed to go out to dinner for SisterK's birthday, so we'll see how that goes. For tonight though, we've got a movie to watch, some mashed potatoes boiling, and Lil Girl is going to have her first bubble bath at the new house: sounds good to me.

(And then later, I'll have The Office to watch< so that's awesome too. )

Thank You

Last year on Veteran's Day, I posted a picture of my father , circa 1980 something, during one of his many tours of duty. He was in the United States Navy from 1978-1993 (? on the ending date), and it's one of my favorite pictures of him, even though I don't have any idea when/where he is in the picture. I was lucky enough to get the picture from three of his on-ship buddies when we met with them a few years back, & they couldn't remember where they might have been (although the consensus was that it was probably the Mediterranean). My father passed away 10 years ago, and our relationship was incredibly complex. But those men remembered him, and thought well enough of him to try to look him up 15-20 years after they had served together. They thought well enough of him to contact my brother, my sister and I and to arrange a meeting with us, after they found out he had died. They brought us pictures and stories and I will always appreciate them for doing it, because so many of my happy memories of my daddy have long been overshadowed by some of his more atrocious behavior during his last years on earth. Regardless of all that, though, I do know that he served his country well and that he worked diligently for many of his years in the service.

I have always been proud to be a sailor's daughter, even when I wasn't proud of the sailor himself. I have pictures of his burial at sea, a few pictures of him in his uniform, but instead I'm going to choose another picture that his friends gave us when we met them. Here he is in the tiny little quarters on ship, being a goof:



My family has a long history of service, actually: My Nana's father was in the Navy, and served during World War I aboard the USS Mt Vernon. Originally a seized German ship, the Mt Vernon was torpedoed by the Germans in September of 1918, while James (my great-grandfather) was serving. Although luckily uninjured, he was sent back to the US following the attack, and served at a Naval Hospital (which is, coincidentally, right around the corner from the new house) near Boston until he was discharged. Here is a photo of the ship's crew I found online - He's in there somewhere:



And here he is up close, in uniform:



My other maternal great-grandfather, (my grandfather's father) also served during what his discharge papers call "The World War" as a Wireman and a Private in the United States Army from 1917-1919. (Unfortunately I don't have any photos of him in his uniform, and actually only two or three pictures of him at all.) And his son, my mother's father, my Papa, served in the Army during WWII: All I know about his service is that he was a driver in a convoy going up the narrow mountain roads (in Northern Africa, maybe?) and the truck in front of him was hit, and drove right over the edge of the mountain. When he came back from the war, he never drove again. Here he is at the very end of the chow line (and not nearly as excited as some of his fellow troops):

On my father's side, three of his brothers served in various armed forces; all of my great-uncles and two of my great-aunts served during WWII (my Grandfather was the only child (of 7) who could not); Both of my Grandmother's brothers fought during the Battle of the Bulge - One of her brothers was a medic, and later told her that his biggest fear was that he would be running through the battlefield and be called to a soldier only to see it was his brother - thankfully that did not happen, and they both made it back safely; And the oldest American Veteran in my family (that I am aware of) was my great-great-Grandfather - my Grandmother's grandfather - who was killed in a flash flood after enlisting in the Union Army.

I'm lucky enough now that none of my uncles, aunts or cousins are serving any longer, but I can remember how scared I was during the first Gulf War, knowing that my father was over there serving. I can specifically remember flipping off the Nintendo one afternoon and CNN was on, and they were showing the live bombings, and I was frozen in fear, worrying that one of those fighting might have been my father, and that something horrible could happen to him. I cannot explain how much gratitude I have for those who are serving, and for their families. Today and always: Thank you.