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.

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

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.

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 your cult 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

"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.

Change of subject

Because one of my favorite Shutter Sisters, Tracey is judging this week, and because I was able to find an older photo I thought fit the theme (negative points, borrowed netbook, for not having a card reader!), I'm entering this week's I ♥ Faces contest. The theme is "Bundled Up", and here's Lil Girl hiding from the wind - and auntie's camera - last winter:

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!

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!

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.

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!

Wisdom from those who came before you...

Funny or Die's Presidential Reunion from Will Ferrell

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?

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.

"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.

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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.

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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.)