This year's word*

*This year will be brought to you by the word "Share"  - alternate, very Sesame Street-styled post title.

As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome.  I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.

What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.

Sharing the parts of me I generally keep well hidden - including being more honest.  Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling.  There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.

Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.

Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished.  It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer. 

Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.

Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships.  I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.

Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.

Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.

Sharing is ...

It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.


And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.

Ok 2014: Be nice to us.

Game On.

Here it is November First, all over again. And for the first time in five years, I have given very little thought to participating in NaBloPoMo, where you agree to post at least one blog entry for every day of the month. I am seriously doubting my ability to complete the entire challenge, not because of something big and world changing, but because of a million different little things. I talked about it some in this post, already, but I'm still finding it difficult to put words to paper (or, more likely, computer screen) in a way that seems legible and laudable. I mean, I can just say random things for thirty days in a row, I'm sure, but I don't particularly want to do that: I think this blog and I are past the point of just posting to have a post up. (At least, I hope we are.)

No, I want what I say here to matter, and that's half the problem right there - it matters so much that it grows and grows in my mind until I can't write anything, because what can I say that's going to be new or different or interesting or worthwhile? And while I have tons of things I think it'd be great to write about, more often then not, they get all stopped up in my head together, and I spend an entire hour trying to untie them enough to type them out, only to wind up with a mess of nonsense that's definitely not publishable.

So I'm not making any promises on my ability to complete the month, but I am going to commit to sitting my butt down and trying to get the words to come out in a way that makes sense, for three reasons. First, I need to follow through with something - I feel like I'm letting too many bits and pieces of who I am slip through my fingers. Second, we all know that having all of this stuff log-jammed up in my brain is not doing me any good, and it'd be great to get some new perspectives on some of this stuff. And lastly, I always feel such a sense of pride and accomplishment when I complete NaBloPoMo, and I'd hate to either lose that feeling or break my streak.

I could use all the good feelings I can get, at this point. So I'm here to kick of November on the right foot, and cross my fingers that it goes as well as it can. Tomorrow we can talk about all the ways it is sucking so far, but for today, November: let's do this!

The I in illness is isolation, and the crucial letters in wellness are we*

Day 10: Someone you need to let go or wish you didn't know

I wish I didn't know so many doctors. Nothing personal, but I could really do with knowing less of them, (or none at all?) and, today, one in particular. One who is doing a whole lot of nuthin, and contributing such gems as "stress can cause hives, you know" or "you're so young to be in a wheelchair" but nothing, that might be considered even slightly, you know, helpful. Not a substantive suggestion in the bunch, just a lot of babbling about "if it gets worse, maybe you should come in and see me..." Even as she was implying that coming in to see her would net me absolutely nothing in the way of a result.

And after sixteen years, I think I definitely need to be quicker to let go of doctors who - while not perhaps actively doing me harm - are also not helping me. Regardless of the fact that it is ridiculous and annoying to have to start all over again with a new doctor, who wants to repeat all the tests you've already had three ways till Sunday. I need to realize that - while there might not be any answers to be have, when you've got such "mysterious" maladies as CFIDS - if you're not helping me, you're hurting me. There's a lot more that they could/should be doing, and if I have to keep searching, I'll keep searching.

So, you're on notice, current primary care "physician": If you're not more helpful the next time I call (and just a free hint for you: Saying "Well, have you tried Tylenol?" after I've already told you that I could take an entire bottle of the damn things and they might as well be M&Ms for all the good they do me is Not. Helping.), then I'm letting you go. For me.


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

To the workers at the Pacific Fatigue Lab and their supporters at the University of the Pacific -

In the next few days, I'm sure you will be inundated with e-mails from grateful patients who are just learning about your center and it's studies through the Phoenix Rising newsletter, but I still want my voice to be one among the many. I've been suffering from CFIDS/ME for the past 15 years: exactly one half of my life. This half of my life has been one of constant health challenges - everything from extreme vertigo to chronic pain, from sleeping 20 hours a day and still being exhausted to catching every cold, flu, virus or bug that waltzes past my window - and a million other strange symptoms that no doctor seems to be able to understand, let alone satisfactorily treat. And while I have managed to adapt, and continue to live my life to the best of my ability, there is always a sense of what this disease has stolen from me, from my friends and family, and what I know it continues to steal from the millions of patients around the world and their families and friends.

When I first got sick, I was a shy teenager who lived at the dance studio five days out of the week: I danced competitively, taught classes, and planned on making it my career. At the beginning of my illness, I took a week or two off, thinking that I would get better with rest, that this would just eventually pass. When it didn't, and I continued to sleep and not feel rested; continued to have to drag myself out of the bed to get ready for school only to have to lie down on the floor halfway through getting dressed; continued to need to be escorted from one class to another because I was too weak and would fall down the stairs, I started trying to make it back to the studio, but could only curl up in the corner when I got there, to fall asleep on the mats. I thought it was just like every other illness I'd ever had - I just had to push through it, deal with the pain, mind over matter: it could only get better. Eventually, when I realized that my efforts to try to dance were only making things worse - that the next day it would be twice as difficult to move, that I would be even slower, that I would need three or four days (and eventually three or four weeks) to recover - I had to give it up. It was enormously hard for me to do, and I still miss it, but it was the right thing to do for my health.

I honestly think that if doctors had had a test like the ones you all are trying, if they had known that exercising like I was would only make things worse, I would not have wound up as ill as I eventually became. I would've understood that my body wasn't capable of the things I was pushing it to do, and would've been able to explain that to others in my life - siblings, teachers, even doctors - who doubted me when all they had to go on was my word. I'm not saying that I still wouldn't have danced, or that I wouldn't have tried the various other things that have set me back over the course of fifteen years: being in a friend's wedding, traveling with my family, attending college - some things are worth the setbacks, some things you do because you can't not, even knowing the consequences. I still have to live my life: what I am saying is that I think my experience with this illness - and the experience of many other patients - would've been vastly different - and hopefully, vastly improved - if we were believed from the beginning; if treatments were based on solid evidence and were therefore helpful; and if we had some understanding of just what is wrong with us.

If the work you are doing right now, and the work I hope you will get to do in the future, produces the kind of results that enable aCFIDS /ME sufferer to say "Listen, this is why my body isn't working the way I want it to," or "I'm not depressed or crazy or lazy - these specific things are going haywire in my ability to produce energy," than you will have done more than you can ever understand. So I just wanted to say "thank you," and to let you know that - while I understand that your studies are not the cure-all I continue to pray for - your work is greatly appreciated by those of us who just want to know why, who need the answers, and the proof, and the hope that you all are working on providing.

Thank you.

Sincerely,
NTE

Words of Wisdom

I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.

From Princess Nebraska

One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.

In high school I was different because I didn't date or go to parties. I never drank or smoked pot (big deals at my high school, anyways), I couldn't drive, & I didn't skip classes because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.

During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses. But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater were the plays were held, the alumni center were committees were formed were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pjs.)

After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got jobs and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.

(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)


"What are you doing now?" "Where do you work?" "Are you seeing anyone?" These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay. I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.

It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be a necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.

It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when you're little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was a challenge I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck. So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."

The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect to other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.

It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.

Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.

I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.

So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.

Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.

So I signed up for a TBR challenge, because I am looking at the amount of books I have to pack - 3 keeper bookcases, overfilled: 2 little plastic 3-drawer chests, also overfilled, of books I've listed on PaperbackSwap and am waiting to swap; all of my children's books (which are in 5 different Rubbermaid containers, three bookshelves in the parlor, and two bookshelves in the side of my desk); and my TBR 'pile', which, at present consists of 2 stacks under my bed (each 9 books high), 3 bins and the books tucked between my mattress and the bed frame (I'm counting 6 on this side) - and I am thinking that there will be no room in the new house for anything besides my books. (Not that we have a new house yet, HA! Am ignoring this fact as much as possible. Moving on!)

When I say that my keeper shelves are overfilled, I mean literally: I do not understand how people are able to 'display' things on book shelves... there is only room for books, and even then, there is still not nearly enough room for all the books. Oh, I've shown you the pretty book case, all organized by color and beautiful, but what I did not show you is the two other bookcases - also well organized (by genre, time period, &/or category), but also overflowing and extra-burdensome. (Also, the drawback of the by-color bookcase is that when you get a new book that should go on there somewhere, you have to shift the whole damn thing and try to make them fit... it's a little aggravating, but still totally worth it if only for the fact that people who Live In Your House and come in your room rather often, are only just noticing - after two years - the fact that it is color coded, thereby proving that they are totally oblivious, as has been previously suggested.)

So, the goal of joining the TBR challenge, for me, was to help me clear up a little bit of my TBR pile, and to commit to it publicly. But here's the thing: my to be read piles are varied and I am a finicky reader: I have to be in the mood to read a particular thing.

Right now in my non-fiction TBR I have a book on helping kids cope with divorce, another 3 or 4 about chronic illness, at least one about style (because I haven't got any), a book on photography, a memoir or two, and a book about food that I started reading in November and it scared me so much that I put it back in the pile, instead of having to starve to death because I could never eat anything again, ever. My fiction pile consists of a bunch of romance novels; a bunch of classics I keep meaning to read; a bunch of contemporary 'literature' that people told me was good or I read an intriguing review of; a few YA novels, a tiny bit of Sci-Fi, a comic book, and holy crap, let's not even start talking about the kids books.

And yet, with all that variety, the likelihood that I will still say "I don't have anything to read" is fairly high. (I will usually say this only to myself, of course, because members of my family are apt to react badly to this assertion, for reasons incomprehensible to me.)

So I've committed to the TBR challenge - for me, it's a 3:1 ratio: 3 from the TBR pile for every re-read or new buy - because I think I am judging my books to harshly - if they don't immediately 'call' to me, then I move on, usually to a reread from the keeper shelves, and the piles don't get any smaller.

Part of this is realistic - since I am no longer in school, I refuse to 'force' myself to read anything: if I am not in the mood for a book about killer food, then I will not read it, even if I know I should. (And will, eventually.) For optimum entertainment value, a book should suit your mood - it should be a good fit. I'm not going to throw that out the window, challenge or no. A second element to the mountainous TBR piles is that I continue to buy new books, which, also is unlikely to change. (Cannot not buy books: is physically impossible.)o

But another part of why my TBR pile never shrinks is a strange combination of laziness and fear - I fall back on the books I know will be good (because I've already read them) instead of attempting something new, taking the risk that this new book will have poorly plotted scenes or lacks witty dialogue. As long as those books stay in the TBR, they have promise, and too often that promise falls through once I start to actually read.

But I've decided that I don't like that aspect of myself - the playing it safe all the time part of me - all that much, and am trying to make changes when I see the opportunity to do so. Yes, this is a small thing, a trivial change, and no real hardship - if a book sucks, after all, I am not required to finish it: I just post it and move on. If it doesn't, and is instead wonderful, I have given myself a treat. Either way, the book is out of my TBR, and so: mission accomplished - but it feels good and necessary and like I'm doing something positive that, if I get the hang of it, might just carry over into other aspects of my life.

"Basically," you are saying to yourself now, "this entire post was her way of saying anything in her life can somehow be connected to books?" And you would be right, I expect. But at least I know I'm not alone.

My Tivo and I will be happy, regardless

It has not stopped snowing here since 1:00 on Friday afternoon, which, by my count makes it 56 hours. It is beautiful to watch, but that is because I am not the one who has to shovel it. My job, as relates to the snow, is to put out clean towels (and warm ones, if possible) for the people coming in. If I am up to it, I also put on the hot water (although nobody has used it yet: it would be the one time I didn't put it on that they'd come in wanting tea or hot chocolate or some such). The little tree in our front yard is covered tip to root, and has no underneath at all: only snow. We've got well over a foot, I should imagine. A lot of schools are closed from now until the 5th of January... no sense heating up the school for a possible half day on Tuesday. Come the end of June, there'll be some grumpy kids (and grumpier teachers), but that's a worry for another day.

For today, there is a Tivo who automatically records everything with the words "holiday, Christmas, or special", and that leaves me with a surfeit of wonderful Christmas movies and specials to watch. Not to mention the ones we already have: tomorrow is to be Love, Actually, the Muppets, and all the old Christmas cartoons that we taped off the television for the past 20 years (complete with vintage commercials! There's M&M commericals, people!) and present wrapping. That's an almost perfect day in my book, peaceful and calm, little energy required, plenty of resting as needed.

I hope wherever you are - snowed in or not - you're enjoying your Sunday, taking what peace you can find. And if today begins the holidays for you and your family, my very best Hanukkah wishes.

(Oh, and in case you don't have videos or Tivo to keep you company, check out the entire week's posts over at the Collective: they've got a lot of fabulous YouTube clips up, which basically include my entire playlist for tomorrow.)

It's that time of year again

and I know you're all wicked excited! No, I'm not talking about back to school, or even the fabulous transition from summer to fall, but, of course, the fact that we're coming up on Heating Pad Weather!

See, I knew you were as excited as I am. Now, don't get me wrong, it's not as if I've ever stopped using the heating pads - that would be foolish and crazy! It's just that using a heating pad in the warmer (and hot as hell) weather makes you feel like... well, like a crazy fool. If it's the only thing that helps with your pain, you suffer through it, but there's nothing more uncomfortable to the rest of your damn self than sweating outrageously because your neck won't stop aching.

I do tend to do a lot more of the icing in the summer, and the heating in the winter. This is only logical, and contrary to popular opinion, getting my Master's Degree didn't educate all the common sense right outta me. But what works best for the worst pain, generally, is heat. A lot of it, I mean HOURS of it, as at high a temperature as possible. So that, I'm nice and numbed up (and my sensitive skin a veeery pink/red color) are the signs that optimal pain "relief" has been accomplished. And it's virtually impossible to accomplish those things when it's 85 degrees out.

So there's a lot of things about fall that I look forward to: the crispness in the air, the lack of flowery smells, the Halloween costumes yet undiscovered, but right now? I'm just glad I can reclaim my heating pads.


And, yes, I have a million things still to talk about, a million things going on here and IRL that I should say... something about, but in the meantime, and because if I don't write something, then I might not ever write anything, and I'm not ok with that.

Oh Lordy,

am I tired and sore.

I'm dragging this week, people: the tonsils that ate my throat are back, trying to see which of them can be bigger. And of course, there's the tiny matter of a slight fever, and, you know... it's hot here, right now, so I'm hot and sweaty and sticky. And, I suppose, slightly crabby... because that sounded a lot like whining to me. Which I don't like, sooo MOVING ON.

So yesterday (or the day before, I guess, because it's 3 in the morning), I got my fantastic Color Me Happy Swaparooni gift, but I haven't taken a picture of them yet, and now it's very very dark and you wouldn't be able to see the pretty little stitches in my pillowcase... The theme this month was Comfort, so getting a book and a pillowcase hit the mark exactly: The SmockLady did a great job, and she sent me what seems to be a great, relaxing book. This was my first swap, and I was soo excited. I hope she likes her package: when she gets it, I'll post what I sent, so everybody can see... I had SUCH fun picking out little pieces for her package, and reading her blog, getting to know her and her family. You should pop over, if you get a chance, congratulate her on their expanding family. You all know how I love big families, so I think Ms. Smock is one lucky lady!

I did reconsider, more than once, joining the group, but only because I hardly ever leave the house, so planning specific trips just to go shopping is not in the normal realm of things around here. But it did me good to journey out of the familiar - and to get out of the house in a non-doctor/hospital/test related way. I've paid up to be a part of the next 4 Swaps, so I'm going to stay in it, I think... It's nice to have something different to look forward to.

People who aren't sick say things like "Don't let your illness define you" all the time, and it's something that makes me want to punch them in the face, because... well, everything that's important in your life defines you, and being sick is pretty damn important. But it is nice to have something separate from that, something that's got nothing to do with pain or pills or my sisters or my parents... just something that's mine.

It's why this blog is so important to me (and why I keep it so anonymous): because it's hard to have anything that's just your own, and I need to protect those things when and where I can find them. So I'm glad to be a Swaparooni member, and will be doubly glad when The SmockLady let's me know that her package arrived safe and sound.

And I'll try to get some pictures up tomorrow... or this morning, if I feel like it when the sun finally gets up.

Happy Wednesday all!

An outing, a book review, a little bit more

Last night I actually left the house for a non-medical, non-wedding, non-child related reason, and went out and socialized with adults!

I know, it's a shock and a half, isn't it?

I went down to Porter Square Books to meet the very fabulous Laurie, who was holding a signing for her brand new book A Life Disturbed. I'm going to start off by telling you all how utterly awesome this book is: If you read A Chronic Dose, than you know that Laurie's style of writing is intelligent, witty, and honest, which are pretty much the ingredients I consider vital in a good writer. You gotta be smart, you gotta be funny, and you gotta believe in what you're telling me, because any of those three things are lacking, I'm just not going to buy into it. Laurie is, of course, not missing out on any of those factors, and it makes for great reading on her blog and in her book.

The book is a series of essays that discuss what it's like to live with a chronic illness as a young adult. Laurie talks about so many things that I talk about here on this blog: how do you merge being independently minded and having to depend on people for your very health? How does society view those of us who are chronically ill (and how can we not care so very much about how people see us)? What are the gives and takes that chronic illness imposes on our relationships, and how do you cope with them?

I can't tell you how many times over the past 14 years I've thought that I was by myself. Even surrounded by a family who loves me and tries their best to understand, even with the few stalwart friends I had to support me at every turn, even with a doctor who kept pushing, kept looking for the answer: There were still (and are still) so many times that I think "I am the one going through this, and it's a lonely place to be." When I found my first CFIDS listserve (way back in 96-ish), it was like finding a tribe of 'my people' (as we called them). These were people who were my age, who were facing the same things I was facing. Who understood what it meant that I had to give up dancing; who cried with me when I missed my Jr Prom because I had pneumonia; who got together and made me a scrapbook when I was bed bound for 3 months. They understood what it was like to fight with your mom, but then still need her to help you get to the bathroom. To be missing classes and feel like you'd never catch up, but to care more about missing out on the talking that went on between classes or at lunch.

I started gaining friends from all over the world, with a wide spectrum of diseases: It didn't matter that our specific diagnoses were different, we still understood each other. They were the people who knew the shorthand of being sick, and I have been comforted immensely by their presence in my life.

When I stumbled into the medical blogosphere (about 2 and a half years ago now), I felt exactly the same way: These were the people who were saying what I was thinking, who I could ask about treatment or television or anything in between. Who understand that it's not all about being sick, but that it's never not about being sick. And so, my 'tribe' expanded, and I have been much the luckier for it.

I've been visiting Laurie's blog for about 2 years now, and she's definitely one of my people: She just gets it. She talks about all of the things that are important in her life, and because her life is impacted by her illnesses, than so are those things. Who she is isn't just 'the sick girl,' but she understands how it feels to be seen that way. In her book, and at the signing last night, she talked a bit about suffering and chronic illness, and how if you're going to go looking for plus sides to the suffering... and you'll have to look really, really hard, because it doesn't have all that many... maybe it's that you can see the suffering, understand the suffering of others. One thing about Laurie's blog, and now the book, is that her ability to empathize is front and center.

But she doesn't gloss over everything either: Life Disrupted is subtitled "Getting Real about Chronic Illness in your Twenties & Thirties," and it follows through on that... There's not a martyr or saint in the mix, and she busts more than one myth about disabled young adults. She talks about employment, marriage, money, & babies - The title of that chapter: "Can vs Should" pretty much sums it up, and I'll just let you know that I cried my way through that entire chapter, but that's something we'll talk about at another time. Even though there were some really tough parts, it was only because they're so true to life... to my life, anyways.

But there's millions of us out there: young adults with disabilities and chronic illnesses, who are all just trying to figure it out as we struggle through it. Everybody struggles - you all know how many things there are that you're making decisions about in your life, every single day: you know how complex and difficult it is to balance all of your needs together. Now imagine adding a chronic illness to that, and it's just one more thing that tips the scales. So it's nice to be a part of a community that helps you to work through those things, and it's nice to see that books like Laurie's can get published. Because people need to know, and she did a wonderful job of telling them.

She also threw a fan-tas-tic book signing, if I do say so: It may have been my first, but I found it impressive - packed and welcoming. Laurie and her family were exceptionally nice to me - I met her Dad, who had strict orders to keep to the back rows and busy himself with his camera, and who couldn't have been any prouder, I don't think. I didn't get to meet her husband John, but he waved to me as I was leaving, which I thought was nice. People I can only assume were her friends started up conversations with me, and let me sneak in the signing line when it had wrapped around to a place my chair wouldn't fit. And Laurie herself was just as nice in person as she is online... she answered questions honestly and with humor, wrote a sweet message in my copy of the book, and even invited me to a little party they were having after the signing. Which, unfortunately, I couldn't get to b/c it had already been quite a long day for me, and I was worn out, but I hope that she had a wonderful time, and that this won't be our only in-person meeting.

Laurie, congratulations on the book: it's fabulous, the signing was great, and I'm so glad to have met you!

Other peoples, particularly those of you who are interested/have no choice but to be interested in living with chronic illnesses: Buy Laurie's Book!

Mosaic Meme

A little meme that I saw over at Abigail's. I love to play on Flickr, so my only difficulty was staying on the first page long enough to put the whole thing together. I may have gotten distracted a few times. May have.


Here are the rules:

The concept:
1. Type your answer to each of the questions below into Flickr Search.
2. Using only the first page of results, pick one image.
3. Copy and paste each of the URLs for the images into Big Huge Lab’s Mosaic Maker to create a mosaic of the picture answers.

The questions:
1. What is your first name? For the purposes of this blog, it's Never
2. What is your favorite food? right now? Right now I could use a pickle
3. What high school did you go to? Somerville High, baby
4. What is your favorite color? Purple... well lilac really, but I put purple.
5. Who is your celebrity crush? I am totally crushing on Stephen Colbert... drool
6. What is your favourite drink? In the summer, I love iced tea. The iced tea in the picture happens to be alcoholic, but I really like the picture so pretend it isn't.
7. What is your dream vacation? I said restful, because that's all I really want right now, just someplace where I feel content and rested for a little while.
8. What is your favourite dessert? My grandmother's lemon squares, which didn't look like any in the results (they're not like a cookie, they're like a ... pudding maybe?), but I LOVE the irony of the picture I chose.
9. What do you want to be when you grow up? A mom. Not thinking about that right now. Moving on.
10. What do you love most in life? Tender moments: those times in life when you're with the people you love most and you're really experiencing it, really feeling it. The ones that you look back on and think "this is why I put up with all their craziness, this is why I'm in the world."
11. What is one word that describes you? I always respond to the question "How are you?" with "I'm doing." It doesn't say much, but I've learned that most people don't really want to know much. So I picked 'doing.'
12. What is your flickr name? BBackPrple, which is a combination of my favorite color and something I used to say when I was little. Every time I'd be going somewhere I'd say "I be back!" It kinda stuck and is now a family saying.



1. Day 203/365: You Never Let Go, 2. Cornichons smell an awful lot like pickles, 3. Zenith Space Command, 4. PURPLE HAZE, 5. Stephen Colbert Christmas Ornament, 6. Long Island Ice Tea, 7. sweet dreams...zzz..., 8. lemon squares, 9. ~ A Kiss For Mommy ~, 10. A tender moment 2, 11. When Waves Collide, 12. Sign of a good book

Please, please feel free to play along: it's a great way to spend a little time, letting your mind wander.

Have a great Sunday & Happy Father's Day to all my dad-type readers (are there any? If so Hello!)

Clean-slating it...

Oh internets, I know I am still waaaaaaaaaaay behind on all of the pictures I have promised you, all of the stories I must tell. To that I say: it'll come when it comes.

I've been trying really hard to catch up, I've been trying all year, since Nana and all of that drama, to just catch up to where I'm supposed to be. And you know what? It's not going to happen... all of the things I was supposed be doing at some predetermined and arbitrary schedule? Yeah, that's so not happening.

Yesterday was my birthday. I am 29 now. It feels very, very strange. There's a lot of things I wanted to have happen in my life, a lot of things I always assumed I'd have or be or be doing by now. And those things? They're not happening either.

It's a lot to deal with, but it's also a lot like taking a big deep breath and letting it out. There's a lot to be said for letting things go.

I have a lot of things I need to let go of, a lot of expectations that I need to reexamine and readjust. And I'm starting to get to the point where I think I have the psychic energy, the emotional strength, to actually do it. I'm not all the way there yet, but it feels like I'm getting there. Getting to the point of being able to say "I'm sorry all of the things you assumed would happen in your twenties just didn't happen for you. It wasn't fair, or right, but it's what happened. You're here now, and you're (mostly) ok. You're (mostly) happy. You're lucky to have come this far, really. So you need to just take those deep breaths and let it go."

It's certainly not an easy thing to do, but it's starting to feel like the only thing to do. It's starting to feel like if I don't do that, if I don't try to let go of some of the things that have been hurting me for so long, I won't be able to make it. And that's not an option for me.

So I have to stop pretending that I've been ok with all of this, with the fact that my body has betrayed me so cruelly. I'm not ok with it... but I can deal with it. It's ok for me to be mad about the opportunities I've missed out on, to be disappointed that I so often feel like a spectator instead of a player. It's not an easy role to have. But if it's my role - if it's going to keep being my role - then I really have to embrace it.

This is one of those posts that I keep not posting because I think it doesn't make sense to anybody but me. But you all often surprise me, so I'm going to let it go this time, say it and put it out there.

Basically what I'm saying is that I'm trying to move forward in a way that is more than just making it through the day. I want to find a way to be living in my skin - my painful, achy, worn out body - and really be happy in the spot that I am in. Even if there's things I don't like about it.

It's so tricky, cuz I often think I'm accomplishing that, but I know right now I am not, I know right now it's been impossible to get past how much I hurt. But I'm going to keep making the effort anyways.

So... next deep breath, and moving on!

Ah, the details...

of being Maid of Honor are many.

But, they're also giving me some place to focus frustratingly unshut-up-able brain cells, so that's a plus.


I thought you might to hear some of the stuff that's buzzing around in my head re: the shower. If only because it's not entirely sad and depressing, which is a change of pace from our recent fare.


First off, here's a (slightly edited) version of our invitation -



Our theme is "a Perfect Pear," but only because I couldn't find any penguins that we could use as favors/centerpieces. (Penguins mate for life, apparently. Or, if they do not, my sister believes that they do, and she and her fiance call each other "Pengy" sometimes. They'd really be quite sickening if I weren't over the moon happy for them.)

Sister Ch scoped out some fabulous (rather large) glass pears at the Christmas Tree Shoppe (nice and cheap), and we're putting in pear jelly beans and a pair of pears, along with a little tag that says "J & K: A perfect pear." (I told you about the sickening sweet, didn't I?)


Things are moving along: the bill & final count is due next week, at the country club we're having the party at. The other bridesmaids voted against me (and SisterCh) and decided that having at a fancier place, but paying for set up and clean up would be better than having it at a less fancy place but having to do more of the work ourselves. Honestly? I didn't really care one way or the other. I just want the day to go well, and feel like if it doesn't, I will feel horrible for having ruined the whole thing. (I'm kinda sad like that: if things go well, I do not exactly rush to take credit, but when they fall apart, I'm right there with my hand held high. What's with that? IDK, but it's probably not for this post, since I promised not to be depressing.

In an effort to fight against that urge, though, I will tell you that I designed the invitation on my own. It's actually pretty easy, since I'm in love with Photoshop, but I still think it came out rather good.)

We're going to have games (although we're not 100% set on which ones yet), and cake smooshing, which I think is rather sensible, since Sister J is dead set against it at the wedding (what with the money she'll have spent on her hair and makeup), and Fiance is very much for it. I figure giving him his shot at smooshing cake in her face is a fabulous way to make sure he has a good time, anyways. And she won't care, because she's not like that, ordinarily.


Here's some of the info I just sent out to the other girls, to give 'em a nudge.

Hi! I just looked at the calendar just now, and noticed that the shower is.. you know two weeks from Saturday. Hello: time is moving too quickly!

I am going to order the favors this weekend, but we're up to 40 something right now, and there's only a few question marks, so we'll definitely come in under 60 people, so that's good.
We have to order the food next week (once we have the final count), as well as a cake (for smooshing & eating purposes), and then the total bill will be due right before the party.


Then I talked a lot of "show me the money," which I expect to be an issue. Because it always is. And these are my sisters I am talking about.

These are the favors we decided on for the wedding, though: how cute are they? And also? Because they're usable (everybody uses magnets!) they're much less likely to wind up in the trash or in the back of someone's closet. Mum has started packing up some of the stuff we almost never use, even though we aren't moving anytime soon, and unearthed a rather large collection of shower/party related ephemera that made me realize that a lot of this stuff is just more junk. People don't want more junk, but they do want something, so I thought this would be good.

So that's the latest from shower central: What's news or exciting where y'all are?

I just want to say a couple of things

Most of those things sound an awful lot like this: Sorry I'm not here so much.

Because I miss it, the outlet, and all of you. And, even though I said it last time, I'm really hoping to be able to recommit to posting here.

I am at my Grandmother's house: enjoying long days of chit chatting & showing of baby pictures, of extra loud news programs & stories I've never heard. Although I am pissed at the PUS because they continue to be insensitive asses, before I left the house I made some decisions:

1) I knew I was going to have to leave (their reassurance that there would be no smells is about as worthwhile to me as something else that smells really bad), and I still don't know if it was for good. And that's sad. If I'm all done living there, I'm all done living there, but it's still sad. Right now, I doubt that it will be permanent, just because there's other things abrewing, but I'll deal if it is. I will.

2) I love my Grandmother: I love spending time with her, even if she repeats her stories or tries to make my uncle give me help that I don't need. I always learn something new about somebody in our family, some nugget of treasure she's forgotten to pass along to me. We look at old albums and point out the guy who came to the reunion that nobody knew, or great-grandfather Gerry and how he walked dink toed, just like me (you know, back when I used to walk). I often feel upset that so many of my Grandmother's children are so far away: for her, and for them. Look what they're missing out on. Every time we get into a discussion, I have to physically resist reaching into my bag and pulling out my camera, turning it to record, and hiding it between the pillows. And I only resist because last time I did that she caught me, and was not pleased. A displeased Grandmother is not a fun time for anyone. So, even though the reason behind my visit is aggravating and frustrating, I decided before I left that I would enjoy it. The additional pain (from laying on her old lumpy couches all day and night), the new smells to get used to, the rashes from her soaps... that's all bearable because I'm more aware than ever that someday, probably soon, she won't be here for me to listen to, won't be here to repeat to me something she heard on the news (even though I was in the room, watching the news with her, and it was just 15 minutes ago). So, today I'll hold our visit close, watch the way she laughs at Lil Girl, the way her eyes crinkle up when she talks about her mother's death (when she was almost 6, so 84 years ago now) and what she was wearing in her coffin. I'm trying to memorize every little thing, because I feel so lucky to still have her here.

3) When I left Thursday morning, it was after the movers came to take Nana's things to storage. That was very difficult, for me and for mum. Because it was like seeing pieces of your childhood, only in the entirely wrong context. Nana's dollhouse didn't belong in a truck, all emptied out and furniture free... It had a place of honor, and was impeccably decorated. The ceramic people (including an older woman in a maid's outfit that we called Nana) should be lined up and waiting: Mother, Father, twin boys dressed in knickers, twin girls in red dresses. Those weird post thingees that I couldn't place were the ends of the dining room table, all pulled apart. Looking at the holes we used to crawl through, endlessly aggravating whichever adults happened to be sitting there, it felt like I had fallen through a hole myself: I was Alice, but instead of a wonderland, I was stuck here.
In tears. I'd prefer the Cheshire cat, I think.

4) There are good things, good and strong and exciting things that are trying to happen in our lives, and I'm trying to be strong enough to let them happen, to make them happen. Wedding showers and christenings, Lil Girl learning to count, Youngest Nephew's first viewing of Indiana Jones. Simple things and extravagant things, and just... other things. And it's hard to be in a place where I can deal with those things, but I know it'll get easier everyday, even though it feels like it won't.

This blog is one of those things.

Getting back to reading and writing and scrapping and the merry go round of medicine: all of those things need to happen, and I'm trying. I really, really am. And other things need to be let go, and I'm trying there too. The PUS, someday soon, are going to drift out of my orbit (or, preferably, be exploded out of my orbit, like that rogue satellite), and they won't be influencing my days any more. I look forward to that eventuality. Sincerely. But, just like I can't sit and wait to get better and do nothing about helping to get there, I've gotta be open to the next steps for getting them gone. So that means I'll be here for now, and they'll be there, and if never the twain shall meet again, that'd be a-ok with me.

(PS - odor free? Means that it smells so badly they moved into a hotel room for the weekend, and Mum, Dad & SisterCh all have headaches from it downstairs. With doors and windows open, in the middle of a snowstorm. Good call. Again.)

So, I'll be spending my day tomorrow (wait, today, as it's 1:14 am), gabbing with Grandmother. Looking at the snow covered streets out the window. Wishing that things were different, but trying to appreciate what is. Thanks for sticking around.

Ta Da!

So, there's still a bit of tweaking to be done, but I've got a new look here! And I did it myself! And it took for-freakin-ever! But it's up!

AND

It's a good illustration of the word I've chosen as my keyword for this year: Closer.

As in, "It's not perfect, but it's closer to what I wanted."

I thought long and hard about what I wanted out of this year, and once I threw out all of the 'miracle cure' and 'totally happy and healthy' pie in the sky things that I have no chance of making happen (although, should they perchance occur, I would have no qualms about accepting them into my life gratefully and graciously), I finally decided that all I want is to be closer to some of my goals by the time 2009 rolls around.

I don't have to be in perfect health, but are there things I can do to help me get closer to healthy? Sure. So why not do them? What am I waiting for?

Same goes for my weight: I am not going to lose 60lbs. while I'm on the meds I am on: it ain't never going to happen. But can I get closer to where I'd like to be? Absolutely I can, and there's no reason not to take those steps.

The key to this year for me, is going to be -

1) Doing what I can, in whatever the situation is

and - JUST AS IMPORTANTLY -

2) Being ok with what I can do. Accepting that I am doing what I can, that I have limits.

Like with this website: Rather than continue with the old design while I obsess about every little aspect of this one, why not put it up? Is somebody else going to think "Oh, well, I think that this color here is about 3 shades off, why'd she do that?" I doubt it. (Although, if there's anything really screwed up, or not showing up that was here before, I would appreciate it if you'd drop me a note. Also: Are there any AdSense users out there who'd like to share their experiences? Thanks!) So instead of driving myself crazy over what isn't done, I'm giving myself credit for what I did do: Designed a simple header! And a footer! (And, hello, was surprised at how easy it is - Photoshop! -, and will now be working on ones I like even better.) And figured out where to find all the numbers for these colors! And so on. Did I know how to do any of those things this time last year? No, I did not.

Showing myself how much closer I am getting to getting the hang of this blog thing - and to giving myself credit for things. Yay!

So, here are a few of the things I would like to make progress towards over the course of this year:

Closer to healthy

Closer to independent

Closer to employable

Closer to being a good photographer; to understanding what the heck an F-Stop is (even though I thought I got it, I don't); to being able to fix some of the things on the camera while I'm taking the shot, so I don't have to fix them in Photoshop; to someday getting a good SLR camera

Closer to happy

Closer to being a more knowledgable blogger, a more reliable poster; a better blog-friend & commenter

Closer to knowing what I'm really capable of

Closer to certain members of my family (and not closer to others)

Closer to understanding - and being able to do something about the way I react to - the behaviors of the people around me (a certain almost 2 year old and a certain 84 year old are at the top of this list, today)

Closer to knowing what's wrong healthwise, and how to fix it; to eating better and reaching a healthier weight; to capable of withstanding every.single.germ that travels within 500 yards of me.

Closer to kind; to gracious; to giving without expecting a return

Closer to free


Some of these are very broad; others much more specific. Even for the broader ones, I have an idea of where I want to go, and the next step or two on my way to get there. And I really don't think that's too much to expect from myself: to amble along the roads I want to amble down, no matter how slowly I have to go.

Happy 2008, friends: May we all be happier, healthier, and have the strength we need this year.

Love, NTE

Moving right along...

I hope your Christmases were all wonderful: I am trying to take it easy in an attempt to recover from the flare (Is it one long flare now? or a million little ones? I honestly don't know - or care - at this point. I'm sooooooo over the flares, my friends.), but between Christmas, our medical chaos, the birthday Clump and other assorted nonsense, I'm not exactly getting much recuperating done.

To be honest, I am sick of thinking about everything. About me, about my grandmother, my aunt, my brother, his kids, my mum, any and all of my sisters.... just the whole dang thing. I would like a long, extended vacation from all drama, but that does not look to be on the menu. And so, we deal.

And I have to say that coming here, reading all of you, well, it helps me to remember that I'm not the only one dealing... that we're all just taking our own tiny steps, getting through each day. And it's good to feel not so alone.

Looking forward at 2008: I'm not usually big on resolutions. I have trouble holding myself accountable for arbitrary things, and generally, if a change is necessary, I tend to try to deal with it then, not wait for the new year to roll around. (I don't always manage to do that, but I try.) So I don't usually do a list of resolutions, and I don't think I'll do one this year either, but I want to do something. I need... something. I want to say control, but that's not exactly it. I need... some, power, maybe? In my own life.

IDK, exactly what I am trying to say. I feel so... swept away. Like I have so little say in what is happening in my life - from my illness, to where I live, to how I spend my day. To the illnesses of the people I love, to how other people's actions and behaviors influence me, to ... just, so many things, large and small. Time is passing, days and months and years, and I feel: stuck.

Not always, not every day and in everyway, but tonight, and lately... it feels overwhelming.

And so.

And so, I'm thinking of adopting the very wise idea I first read about at But You Don't Look Sick. Spoon Theory author and website founder, Christine Miserandino talks about picking just one word: a theme for the new year. It's an achievable and encompassing goal, to my way of thinking. It allows for both specifics and generalizations... a word that has meaning to me and can be easily remembered when I am faced with something that I feel like I need to change.

Of course, now I need to pick a word: a keyword that will help to guide me through what will most likely be a trying (and downright difficult year). I've got a few words rattling around in my head tonight, I'm going to let them simmer a bit more, and then settle on one.

Meanwhile, I'm interested to see if you all are resolution-ers, or if the start of the new year is just another day of you.

Who'da thunk?

Well, Maya's Granny, I'm glad that you asked!

Ms. Janice has awarded me with the Thinking Blogger award, a prize which you have - rightly - received yourself (otherwise you'd be getting one today). In her post, she said some awfully nice things about me - Janice, remember what I said about how easily I blush? Totally happening right now! But, I really appreciate the award, the hugs, and the fact that my blog makes you think!

Here are the rules of the Thinking Blogger Award:
1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think.
2. Link to this post so everyone can easily find the exact origin of the meme.
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.



The blogosphere is certainly filled with places that have reminded me that I used to have actual working brain cells, and that they used to be interested in more than my current white blood count or how low a person's blood pressure can actually get before they land on the floor. Not that these things still aren't important, just that there happens to be more to life than my small little world. And I'm glad to be connected to the rest of the world again.

I don't think I can explain to people who aren't housebound, or practically so, just how quickly your world narrows. Just how seeing the same things, doing the same things, talking to the same three people, looking for something to eat in the same two cabinets, day after day after day can make the world a hopelessly small and joyless place. Blogging, and being a blog reader, has reopened a lot of the world to me. I wouldn't be thinking about feminism in
comic books or what font Aveeno uses on their products in the course of my regular, ordinary day. And that's too bad, because there are other important or enjoyable things to think about. It's nice to be reminded of that.

Here are 5 blogs that do my reminding:

The group of bloggers over at The Hathor Legacy, who've helped me to see that feminist theories should apply everywhere - even in fictional places. They talk a lot about representations of women in media - Some recent examples include Law & Order SVU & their hilarious take on the newest Slim Fast Commercials: "I think my brain just threw up. I didn't know that was possible."

I've got to give one to Tracey, over at Picture This, because she's really helped me to think about myself as a photographer, as a writer, as an artist. Her posts about different techniques have given me so many great ideas & new perspectives. Between My Best Shot Mondays and Theme Thursdays, I find that I'm lugging my camera around during my day-to-day more, looking for photo opportunities all the time.


If you haven't been reading Soul Gardening, then you've really been missing out. A new mother who's trying to figure things out, Soul Gardening is living up to the goal she had from her very first post: "I hope that I'll be able to write well, with honesty and humanity. I hope that if anyone reads my words, they'll be able to see something of themselves. And if these words end up being just for me, that's okay, that's why I'm doing it anyway." As I, or any of her readers, can tell you, she is certainly not writing just for herself.


Although she's on vacation just now, Chaos Theory(named 2004's "Best Blog Title Based on Ian Malcolm's Dialogue in Jurassic Park") is a blog I look forward to reading every day. The variety of the posts & range of subjects covered is amazing, and definitely gets me thinking about a LOT of things.

Lastly, I'm going to award The Happiness Project blog. Which filters through all the research about how to be happy and gives us just the most important parts. Tips and quotes and the 12 commandments of happy all help me to reflect on what being happy means to me, and how to get there.

So there are my five picks for Thinking Blogs... thank you again, the always thinking Janice (and extra thanks for putting up that nice picture to go with your post!)

Let's talk a little bit about faith.

Or, let's try, before I go off on some rambling incoherent tangent.

Growing up, I was a good Catholic. I had the Mass memorized by the time I was in 2nd grade, just from hearing it week after week after week. (I never understood why anybody, let alone adults, needed the missilette: He's saying the exact same thing as last week, people!) I won prizes by answering trivia questions from our priest. (All of the questions were, to anybody who paid any amount of attention, ridiculously easy: Who wrote the Gospels? Name some of the people Paul wrote letters to. What does it mean when we make the sign of the cross over our forehead, mouths, and hearts right before the Gospel? I won a bike for that one, thank you very much. The hardest part, for me, was overcoming my shyness enough to raise my hand in the church full of people. I used to whisper the answers to my friends, let them raise their hands. Sometimes they shared the prizes with me - in addition to the bike, there was a turkey, a twenty dollar bill, and some books).

We prayed at home before meals & before bed; I made my first communion; I read at Sunday Masses (this was before girls could serve on the altar); I aced my CCD courses - and eventually taught CCD; I used to march in the May Day processionals and join the Blessed Mother's Rosary (where we would say the rosary as we walked around the outside of the church. In October. In Massachusetts.)

I was a good Catholic. And I believed.

I didn't just say I believed: I really, honest and truly, believed.

I was a normal, mischievous, playful kid, but I believed in God and Jesus, Mary and the Holy Spirit, Heaven & Hell, confession and contrition, the seven sacraments and the deadly sins: the whole bit. The Creed during the Mass was my creed: I believed in it all, at least, what I >understoodof it. (It's the second version on that page, btw.)

I was ashamed when I felt I'd sinned & confused when I had ideas that ran contrary to the teachings of the church. I thought almost everybody was Catholic like me, and felt sad for the few friends I had who weren't, since it meant they wouldn't go to Heaven.

But somewhere along the way, I started to have doubts. Something that didn't add up here, something that just felt wrong to me there. All the hows, all the whys.

In the end, it was as easy as a few unanswerable questions, asked to the priest leading our Confirmation class - questions about infallibility and church policy, questions about suffering and loss, questions about what kind of a God they had sold me on. And when the priest couldn't answer my questions to my satisfaction (and, at 17, it would've taken a lot for him to satisfy me), I had had enough. I was confirmed because it was what one did in my family, but inside I knew I wasn't a good Catholic girl any longer.

Ten years later, my perspective has changed a million times, but I've still never gone back to being a good Catholic. A cafeteria Catholic on my best days, a complete atheist on my worst. Mostly, I fall into the agnostic category: Just plain unsure.

In college I took courses on religion. I studied philosophy and the birth of religious dogma, and came away more confused than ever. Add in all my psychology and the theories on brainwashing and religion as cult, and the scientific explanations of what it means if you're hearing voices, and things kept getting jumbled up.

On my own, I've read about the beginnings of the Catholic church, and its controversies and inconsistencies over the years. I've studied Judaism, Buddhism, Islam, the different Christian sects, and found things in all of that that are to be much admired, things that are to be feared.

But there still has never been just one *answer* for me.

And I long to be little if only to have that belief: that certainty that there was something out there, someone, in charge of us all, making sure we did alright. Tried our best, came out OK in the end.

Because a lot of days, it just doesn't feel like that's true.

So I envy my grandmother who, though she'll be 90 next month, never misses a Sunday or Holy Day Mass. Ever. Who just believes. After all she's seen, all she's lost, all she's done.

Because to have that comfort, that bone-deep belief is a feeling that I wish I could get back. Because I may not go to church on Sundays anymore. I may loathe the influence of a few high placed, highly immoral 'religious' folks in our political system. I may think the Catholic Church will have much to answer for if Judgement Day ever comes. I may roll my eyes when someone says they're praying for me. But I want it to be enough... I want it to be true. I want to feel, when I'm mumbling my Hail Marys, that there's somebody up there listening. Somebody who's on my side.

Photo-biography

Bethieclaus had a post (a while back) with her autobiography in Google images. I liked it so much, that I decided to do mine. Only with Google & Flickr, because, well, because I wanted to.

Here's what I'm all about, I guess:
My age at my next birthday:

twenty-eight years complete.....
Originally uploaded by boristheblade.

My Favorite Color

purple haze
Originally uploaded by haanii.

My Middle Name


Source - DizzyScorpio







Last Thing I Ate

Blueberry Muffin
Originally uploaded by Joshua David.

My Bad Habit


Source

My Favorite Fruit or Vegetable

Source

My Favorite Animal

Cuddly Dog
Originally uploaded by IndiepoprockJesse.

Town I Live In

Originally uploaded by musicmuse_ca.

My (past)Pet's Name


My Current Crush


SourceSource

My Occupation

... super awesome aunt
Originally uploaded by massdistraction.

My Birth City

Bridge over the Malden River
Originally uploaded by senorton.

My Favorite Song at the Minute



Source


Please play along, if you'd like.

So, there's this contest

Over at Adventures in babywearing, about blogging without makeup. Since I can count on one hand the number of times in the past year I've actually worn make-up, I should be a shoo-in. But ... I also don't take pictures of myself. (Hello? That is why I have the camera... duh! Oh, and also? I'm supposed to be mostly anonymous: my picture might give things away a bit)

Since she's so gracious, Stephanie made an allowance for those of us who wouldn't feel comfortable posting our pictures. We only have to talk about it, link y'all back there so you can see the purty ladies. (Seriously? If they look that good without makeup, I'm thinking the whole cosmetics thing is probably a racket.)

So head on over there and check out some brave and beautiful ladies.