"You may never have proof of your importance, but you are more important than you think. There are always those who couldn’t do without you. The rub is that you don’t always know who."

In the next week or so, everybody around here who's going back to school will be heading back. I've already got a steady influx of teacher friends on Facebook lamenting their return to lesson plans, field trips, and core curriculum. I've gone through an initial round of first day of school pictures, and will be prepared for the next round to hit right after Labor Day, when most Massachusetts kids head back to books, backpacks and (hopefully) brain expanding in various forms. It's a time of year that hits me hard, usually, since I am not among those going back to school.

It's been 12 years since I've headed back to school on a crisp September morning ~> before that, I'd done it steadily (and with great enthusiasm, for the most part,) for the previous 19 years, as both student, and then teacher. And I miss it. I miss having to meet my class in the brisk schoolyard before the bell rings on a December morning, watching them all fidget their way into the building, seeing as they mentally prepare for the day now that they've got enough of the school year under their belts to know what's expected of them.
 I miss circle times and study guides and picking the exact right book to introduce the exact right concept. (Not that I have stopped doing this: you can ask pretty much anybody and they'd tell you that my solution to almost everything is the Exact. Right. Book.) I miss the hugs you'd get spontaneously when a kid just overflowed with happy, and the look on their face when something you've been trying to squeeze into their head a million different ways suddenly fits just right, and they get it. I miss having a kid in my class draw a picture of our class, with me in my wheelchair, as if that were the way we were naturally supposed to be drawn. I just miss it, sometimes, is all. And it makes Septembers hard.

But I also think about all the things I've been able to be a part of because I haven't been working. All the days I would've missed out on if I hadn't been able to live with people and make not working a possibility. (Because, health wise, working is not a possibility. But financially, not-working means being incredibly poor. Or, in my case, homeless without the support of my family.) A lot of the things I've been a part of in these past 12 years - good and bad - are things that, had I been at work - I might have missed out on. Or, at the very least, I wouldn't have gotten to experience them as completely as I have.

It's only because I wasn't working that I was able to stay with Grandmother during her final summer:a As hard as that was, it will always be precious to me. Same goes for the time I spent with Nana. I was able to spend a significant amount of time helping to raise the children in my life - thinking of all the times I was able to rock one of them to sleep or help them learn to read or argue with them about politics or introduce them to a particular obsession of mine, those are things I'd never trade. I know that I am lucky to have had those times, to keep having them. I've been able to sit with loved ones who were sick or sad or lonely or lost; I've had the time to lovingly craft things for those I wanted to show how much I cared; I've read all the books in all the land (never: but I'm at least attempting it); I've done good things and tried to be a good person.

It isn't as if I would have consciously made these choices - be sick, don't work, stay sick but learn how to care and express your caring in whole new ways - but things happened, and I did make choices, I have TRIED.

So here we are at another September, and I miss it again: the lure of being normal, of doing what I set out to do with my life is strong. And still: there's another situation in our family where I realize, yet again, if I were working, how would I help? How could I be available when people needed me? It's a real mixed bag, this life. Because I could not be more grateful that I CAN be around for those I love when I know they need me most, but I still hear the siren call of school bells, still get that little twist in my gut when the bus drives by, still sometimes send my teacher friends ideas for lesson plans, unsolicited.

September was always the New Year for me, logically. It never made sense in January, still doesn't. September's when things start changing, when the weather wears down and turns vivid, when the air gets fresher, when the routine starts anew. Our routine this September is going to be a tough one, one of holding together the pieces for as long as possible, and cursing cancer, and helping kids to understand things that there just aren't any Exact. Right. Books. for. And I feel miserably underqualified for this, and too far away, and too close, and yet: that's what you do, I told my brother, as he calls me and worries about his wife. "It's what you do, even though it's torture. You show up, you walk through, you do your best, because you love them. It's all anybody can ask."

So I let myself be sad about missing the work I wanted to do, and I show up. I do the work I've been doing, and instead of sharpening pencils, I try to sharpen my wits. And instead of grading tests, I try to judge where on the emotional breakdown scale my nephew might be falling today. Instead of lesson plans, I work on treatment plans. And I do my best not to do too much, or too little, and I just show up.

---Title quote: Robert Fulghum, All I Ever Really Needed to Know I Learned in Kindergarten (where he, by the way, agrees with me about the whole September = New Year thing.)

Venturing out (or, why I don't go places)

So last night, I did something I've been vowing to do a lot more of, but things - mostly being sick, or trying to accommodate other essential parts of my life - kept popping up and preventing me from doing: Leaving the house to do actual grown-up things.

Now, some of you may want to quibble over the definition of 'adult' when I tell you that the thing I attempted to attend last night was a book signing by one of my new favorite authors, Rainbow Rowell and David Levithan, whose work I have also really enjoyed - and who both happen to write YA fiction - as well as and two other authors whose work I had not had too much experience with before last night, but whose readings last night definitely made me curious enough to put them in my TBR heap.  (Paul Rudnick & Bill Konigsberg), but those quibblers would be wrong.  All books for all people, that's my motto.

Anyways, in order to go to the signing, I did what good chronic babes do - plan ahead, figure it out, try to make it work. I spent the day in bed, recuperating from a rather long Sunday of crafts with the family, and gathering my spoons for what I expected to be a couple hours of an outing (at night, in the cold, which aren't my regular things, so therefore take extra spoons.) Which, I was totally fine with doing - that's this American's life, anyways - chronic illness = chronic spoon hoarding.   I got up early to take a shower, so that I could have a nice long shower coma during the afternoon, and then spend some time getting ready to go out, and then hit the signing. And I rationed my meds & my meals appropriately, so that I'd hit the peak of pain management right around the time of the reading, be able to pop the next dose probably while waiting in line to be signed, etc. etc. - In short, all of the bits and pieces that go into everyday chronic living that people without chronic illnesses don't take into consideration, and usually I don't mention - They're just the cost of living in this body.

But the reason I remind you of that cost is just to show you you that that's where my evening started.  That's the blank slate of my night, if you will: A lot of effort went into getting there, and then it went down hill from there, but I just needed to remind you (and myself) that it took a lot to get there in the first place. 

 I'll also tell you what else is the cost of living in this body, and that is showing up at a book signing - that you have spent nearly a month anticipating, because people you like have been telling you how great this author is and how awesome her books are, and then you read the book and they are right, and she is awesome, and now you Must Meet Her -  a half hour early - to get a good seat, even though I've got my own chair, I like to make sure I'm not in an aisle or blocking people's way or sticking out like a sore thumb or anything - only to find out that the signing - which has been highly publicized by the bookstore through its tweets and tumbls - is down a flight of stairs. 

Now, ordinarily, I have reconned any new experiences quite thoroughly, so that this sort of disappointment is not a common thing anymore: A few years of showing up to places that you can't get into is both demoralizing and informative - you learn pretty quickly to call ahead and triple check.  But the thing about this bookstore is that I've been there before.  More than once.  And while I knew they had a downstairs, used books section, it did not occur to me that the signing would be there, because I had been to a previous signing - much smaller: I admit now that I should have recognized and realized this - that had been held upstairs.  So I was super excited that this little independent bookstore - one of my personal favorites - was having one of my new favorite authors to a signing, and the logistical part of my brain skipped right over the "well, where are they going to put the people for this signing if there are four authors?" part of the equation.

Still - a flight of stairs is an insurmountable obstacle for me, BUT, I was quickly assured by the booksellers that the event would be broadcast over the speakers to the upstairs, so I would be able to hear everything, and that my book would get signed, and that they would have the authors come up to meet me at the end.  So, after some mental realignment, I paid for my new copy of Eleanor and Park (I've only read Fangirl, which I love, love, loved,) and asked the clerk that I'd brought my own copy of will grayson, will grayson to be signed (and was assured that it would be fine), and I set about to listen to the readings and browse the bookstore.

Which - while not optimal, what with the phones ringing and the people upstairs not understanding that when an author is reading you should be quiet - mostly worked out OK.  A few twinges here and there when the crowd upstairs was too loud, or a question downstairs was too quiet, or the crowd downstairs laughed collectively and my gut gave a little pull at being - once again - on the outside.  Everybody down there was fangirling for Fangirl, watching as the authors read a scene aloud, and I was up here, trying to balance books on my lap and stop people from bumping into me while I parked my chair under the nearest speaker in what I hoped to be an unobtrusive corner.

But it got so much worse once the readings ended, and the signing began.  Because then the speakers shut off, and I was cut off from whatever was, collectively, happening downstairs.  Except for the random bursts of laughter, or the intermittent groups of people exiting, all chittery and excited. And I know that the reality of it is that a large group of mostly teenagers and college-aged kids were crammed into a basement room, hot and sweaty in their overcoats, even though it was freezing outside, just because there were so many of them and the line was so long. The reality of it was that the authors tried to talk with everyone and joke and smile and shake hands, and sign and personalize, all while trying to rush things forward, to get to the next person in the never ending line.  I know that that's the reality of it.

And I tried to convince myself - or my mother, as she got more and more put out on my behalf as the hours passed - that I was lucky to be up here browsing through the bookstore while waiting, instead of stuffed downstairs with everybody else.  But I didn't buy it, and neither did she.  Because that's part of it.  That hot cramped, impatient wait in line is part of the experience, and I wasn't getting it.

It's a hard thing, it's a terrible thing, to have something that you want so close, and be unable to get to it. I mean, all that was keeping me from being a part of things was those stairs, and the longer I waited, the more I tried to convince myself that this was all fine with me, that being excluded didn't hit every soft spot I had, didn't make me feel stupid and unnecessary and make me question why I even bothered to leave the house in the first place.

And see - that's the thing that I can't explain to the lovely clerk at the store who kept telling me the line was moving and things were progressing - that it wasn't the wait that was bothering me, it was being left out.  It's the part I wasn't able to explain to the book signing lady who rushed up the stairs, all apologies and explainations of my book getting mixed in with the preorders - that after four hours of waiting, and the store closing down around me, and listening to people joke and laughter rumble up from the basement, I had to go, I had to leave or burst into tears right there. 

The clerk called down when I was the last one left upstairs (Well, me and my pissed-off mum), asking about my book, and I knew just by the tone of her voice while she talked to the person downstairs - that slightly annoyed, slightly embarrassed, slightly trapped 'I don't know what the hell do do with this lady in the wheelchair who's just up here wandering around waiting' tone - that I wasn't near as OK as I was pretending to be: Here I was, in a bookstore nearly all by myself, which is basically like a wish-come-true-territory for me, but after hours of pretending I was alright with being left out, suddenly, my stomach started roiling, and I could feel the tears gathering, that tightness in your chest that warns you you're probably going to cry.

So when the event lady came bustling up the steps a few minutes later and asked for my name again - and then flew back down the stairs to get the book signed - I just, felt frozen.  Felt forgotten and frozen and knew I was going to cry.  In defense, I picked up the book nearest to me, turned my back on the clerk and my mother (who had been getting more and more agitated and whose agitation was wearing on me) and just stared blankly at its pages.  I have no idea what book it was.  I turned pages blindly for the five minutes it took the event person to come tearing back up the stairs, signed book in hand, apologies on her tongue.  I think I thanked her, I know I tried to thank the clerk: I basically "ran" as fast as my wheels would take me so that I would be outside before I started crying.

I mean, it sounds ridiculous to me right now, typing it out, to say that "I didn't get to meet the authors I went there to meet, and so I burst into tears."  That's not it, although that was super disappointing  - Because Rainbow seems so lovely! and her name is Rainbow! And David was hilarious! and the other authors were so charming and self-effacing I knew they would be my kind of people too.  It wasn't just that, is what I mean.  It was being forgotten.  It was forgetting to double check, and thinking I was safe in a place because I've been before.  It was waiting for four hours - patiently and without fuss - and realizing at the end that I should have made a fuss, that I'd made a fool out of myself by waiting. 

See, on here?  On the web? I am totally confident (well, mostly confident) in my ability to stand up for what's right, disability and accommodation wise.  In person, I almost always feel like I'm asking for too much, or that asking for anything is being pushy.  I've gotten a LOT better - you wouldn't believe the things college-age me let people get away with (I don't); but it's still SO hard for me, especially in the moment.  In the moment, I convince myself that whatever other people are offering is alright.  I convince myself that second best or third best or not worst is good enough for me, because it allows me to participate somehow.

Thinking it over this morning, I see all the things I could have or should have said or done -  I should have said something to the event person, right at the start, about arranging to come back at the end of the signing to meet with the authors.  I should have listened to the reading, gone to dinner, and told them I'd be back at the end.  I should have asked to meet the authors when I first got there - before the scheduled signing - once I learned that the event was inaccessible.  I should have done any or all of these things.  Instead, I let myself accept the solutions they offered, with the mindset that them offering any solution should be enough for me.

It isn't enough.  It shouldn't be enough. And that is why I left in tears, and that is why I was so upset last night (and am still upset today): Because it took so many spoons to get there in the first place, only to have my hopes dashed.  Because I rolled around a store I used to love for four hours, listening to authors I enjoy, and now my enjoyment of both of those things will be colored with the regrets of yet another time I didn't speak up for myself. Because my mother sat there fuming and asking if I wanted her to say anything, and it's embarrassing to have your mother realize you should be speaking up for yourself before you do. Because I never got my copy of will grayson signed. Because when they started shutting the lights off and making announcements over the loudspeaker about the store closing, I felt like nothing more than a scolded child.  Because I left in tears instead of raging at the very nice people who made some mistakes and missteps, but probably didn't deserve either.


 Because sometimes I just want to be able to go the fucking bookstore and see an author and not have to worry about spoons and stairs and being left out. 

---- Edited to add: Of course today I see on their website (which, since I generally follow them on Twitter/Tumblr -and again, I had been there before - I hadn't thought to double check and it says "Our downstairs event space is not handicapped accessible; if you need further assistance please call ahead of time for accommodation." So I can't even say that they weren't clear about it beforehand: it's just my own assumptions that started this snowball rolling down the hill. ----

I don't know if you guys are on Twitter

but I highly recommend checking out the #solidarityisfortheablebodied hashtag that's trending right now (Friday night, around 8 pm). 

It's enlightening, and I consider myself pretty disability savvy.  You never know everything, though; my issues as someone with chronic illnesses and various disabilities is different from even people with the same illnesses, and the spectrum of disabilities is wide and varied.  This is one of the reasons I love the Internet, because it shows you all the things you don't know you don't know. And it makes me feel SO MUCH LESS ALONE.

I don't know how many times I've said it here, or how many ways, but I don't think I could ever state it too much ~ I don't know what I would do if I didn't have a place to find 'my' people, to hear other people say the things my brain has been shouting at me, and to realize that it's not just my own ridiculous crap.  That doesn't just apply to chronic illness parts of me either - finding book nerd friends, and pop culture geeks and moms who don't care that I don't have kids (yet) and people who know they're writers but really would rather do anything besides actual put words on a paper (until they are doing it) - all the various parts of me that I have found echoed in other people online has made me feel so much more connected, so much more a part of things.

Anyways, if you're up for some learning, check out #solidarityisfortheablebodied - I guarantee there will be something there that makes you go 'hmm.'

Thoughts on my ill-aversary

Today’s my ill-aversary. The last day I remember being well was October 19, 1994.  I was 15 years old, and spent the day with my friends, painting @ a hospice with a volunteer group, then running around Boston via the T with the kind of joy that only those who’ve just recently been allowed to go places unsupervised can muster for subway rides.
The next day I woke up unable to swallow and I felt like I was wearing a dozen coats made of lead.  I was exhausted in a way I’d never felt before, I had a super high fever, tears leaked out of my eyes when I tried to move, and (what turned out to be the first of so many unhelpful) emergency room visits told me that I would just have to wait out my “unidentifiable virus”. Except it just never went away. 
From there, to mono, to ‘infectious process undetermined’ to ‘autoimmune disease as yet undiagnosed’; through CFIDS and Fibro and POTS and asthma and walking pneumonia and shingles and ‘genetic issues’ and migraines and whatever the hell else is wrong with my immune system and disaster area of a body at this specific moment in time. Most days, I figure I have a pretty good handle on how to live the chronic life.
But today, when I remember the girl I was 19 years ago (and knowing full well that who you are when you are 15 is awfully different from who you are when you are 34, chronic illness or not) I’m sad for her.  The girl who thought she was going to be a dance teacher, and woke up one day unable to stand long enough to turn the music on for her class. Who tried to keep dancing but, eventually, between the passing out and the feeling like she was having a hard attack every time she moved, had to stop. The girl who was shy but worked so hard to make new friends, who saw a lot of those friends disappear when her symptoms kept her home, again, always.  The girl who just didn’t understand why she couldn’t MAKE HERSELF GET BETTER, no matter how hard she tried, no matter how closely she followed the doctors’ directions, no matter what witchdoctor-y potion she willingly swallowed.
I want to go back and give her a hug and tell her I believe her: which was the thing she needed to hear the most back then, when even the people that ‘believed’ her had their doubts. When even she had her doubts.
I want to tell her that - even though she won’t get better (and will, in a lot of physical ways, get worse) - that it’s still worth sticking around. That the chronic/spoonie life is definitely living life at the hardest level, and I’m sorry we have to do that, but we are going to do that. Even when it feels like we absolutely can. not. for. one. more. day.
There was internet when I was 15 - bare bones internet: DIAL UP internet , but there was no Tumblr (There weren’t dinosaurs either, though, you whippersnappers): at first, I was so alone with my illnesses that I might as well have been in Siberia compared to everyone around me. My friends didn’t get it, my family often felt I was exaggerating, my doctors kept saying to push myself harder, not understanding that - the type of kid I was - I would push myself so hard that I wound up in the hospital (a lot). I remember that girl, and how alone she was.
And then I found the corner of internet that I needed to find: There were listservs (which, again: dinosaurs), filled with other kids/teenagers who were just sick as I was. Who got it. Who didn’t have the words ‘complainer’ or ‘lazy’ superimposed over their mental pictures of me. Who helped me understand that I was more than just the sick girl.  The CFS-Y (and later CFS-20s) groups were my link to people like me: and once I knew they were out there, I had to keep finding them.
From the listservs to forums, to my own blog and the blogs of zillions of other spoonies, to Tumblr - I honestly don’t know what would have become of that girl if she didn’t have people who understood, somewhere out there in space, to talk to. And not just other spoonies, but just people who listened and got it, and let me talk, and heard me. Even now, when I’ve got a family who (mostly) gets it, and friends who try: to have this space out here to say what I need to say, and to see that there are other people who are dealing with the same crap as me? It’s invaluable.
IDK where this is going: I started out feeling really sorry for myself because, 19 years ago, I was a different girl… Who isn’t that true for? And I’m still sad for me/her - for that life I wanted that wasn’t to be.  I’m sad today for the things I want (work and family and adventures) that just aren’t possible for me right now, because of how sick I am. And that sucks, big time. And it sneaks up on you, even when you think you’ve got a handle on it.
But also? I want to say thanks; Because the only reason I’ve even partially got a handle on it is because other people get it. Because there’s people out there listening. And sharing their stuff too, to make me feel less like I’m stuck in Azkaban all on my own, Dementors roaming & waiting for me to try to escape.










(cross posted on my tumblr)

    My Grandmother's birthday is this month.  This week now.  Sometimes, when someone dies, the anniversary of their birth or death just sneaks up on you, or (if you're lucky) right by you. As someone who's lost (I was going to say a 'fair' number, but 'fair' doesn't enter into the conversation when you're talking about death, so I'll stick with) more than one person I loved, I've lived through loss long enough to know that it (mostly) does fade enough so that some years a birthday or death day will come and all I'll feel is that tug of longing, that twinge of regret that I no longer have that person in my daily life.
    But firsts?  Firsts of anything are ripe old bitches - and I know that I have been not been doing particularly well with my grieving process in the first place, this time around.
    Mostly I feel like everybody else moved on, and I'm still stuck in last summer, holding the hands of a woman whose face I'm trying to carve into my memory as I watch my face fade from hers. 
   I can't explain how powerfully & profoundly that experience has changed me, and yet - nothing else has changed! She's still not here, and I still am: stuck in my bed, in this house, in this life that I don't want or recognize, but lacking the ideas, strength (physically & mentally), and just plain energy to do anything about it. 
    And now her birthday is coming up, and I'm hyper-aware of it.  As in, I usually have no idea what the actual date is, unless I have a doctor's appointment in the near future, but ever since July 1, the calendar has been mocking me.  It's been a constant, in my face, reminder that JULY IS HER BIRTHDAY and HER BIRTHDAY IS COMING, PREPARE TO CRY. The date has been getting closer and closer, and my mood has been getting darker and darker. 
    I think about how, for most people, Friday will have no meaning at all... even in our family, Grandmother's actual birth date was always one of those "Is it the 17th form 1919 or the 19th from 1917 or maybe it's the 21st?" kind of deals. (My family is bad at dates. Also time. Also lots of other things that matter to me a lot, which you can see would be kind of frustrating.) And for me, Friday is a huge, looming, taunting thing that I'm trying desperately to avoid, knowing it's going to come and suffocate me anyways. 
    Because, as I said, I'm no amateur at this whole grieving thing (even if it feels like I am, every. single. time.), I've done my best to keep occupied, knowing that distraction is one of my best coping skills.  I've tried making plans for the actual date - my best friend is in New York, all my siblings are working, Mom says she is up for anything, but lately it's all she can do to not melt into a puddle every time she ventures out into the hot - and I think I've wrangled myself into a kiddo sleepover, finally, but - like everything else this summer - it's complicated too.  No Longer Youngest Nephew (soon to be by the power of two, come to think of it) is 13 now, and .... while he's up for games and stuff, it's as if when his voice cracked, his preferences for spending time with me did also. It's not that he doesn't love me, or that we can't still have a good time together every now and then, but he'd rather be with aunts who drive cars to New Hampshire where he can hang out with his older cousins, or aunts and uncles who let him watch R rated movies and take him to hockey games.  The largely sedentary Auntie NTE is no longer first (or even, honestly, second or third- which would be sitting at home playing video games) choice and, wow does that sting.
    Still, I'll be glad to have them here on Friday, to give me something other than my own gloom to focus on. And - even though I know it is, in part, because of the overwhelming upcoming birthday - Holy Jupiter has this month (/season/past 9 months) been full of gloom for me. Let me just mention this one other thing, real quick, that kind of explains why I've been avoiding this space and writing in general for the last little (ok long) while:
     Along with the gloom, which I recognize as both a normal part of grieving and a truly hideous part of grief, I've also been experiencing something a little bit more troubling, because it dabbles its feet in the "how close are we to the edge of depression here, really" pond, and that's terrifying to me.  It's something that has been growing since before she died, when I felt like it was just me and UJ in the trenches and everybody else was sending care packages every now and then, but had no idea what it was truly like to be waging war against a disease that made you a stranger to the person you loved so much.  And it blossomed once we lost her, and then my sister & her husband were forced to move out, and my mom's depression spiralled downwards, and everybody I knew was fighting their own ridiculously hard battle, and asking for my help, sure, but you can't tell people how alone you feel when they're crying on your shoulder.  And somehow, even though I've tried reaching out, I am left, once again, feeling forgotten and outlived.
     Which is not the kind of thing you can say to your pregnant baby sister, or your other baby sister who moved to the middle of nowhere again, or your other baby sister who you're so fucking proud of you could burst, but miss more than air sometimes - but it's how I feel.  And even though I know that my family is not, in fact, "leaving me behind" (and also that it's not their responsibility to make me feel better about feeling left out, really), but it's kind of hard not to feel that way when you've experienced it so often, just by virtue of being the sick one. First with my high school friends, then when all my college friends started getting jobs and getting married, then when they all had their first round of kids, then their second (and some are now on their third), and this may sound weird, and horrible and selfish, but it recently just occurred to me that this is the first time that I have been the only one living at home, and it makes me feel (ancient and weak and useless and pathetic) a whole boatload of things that I know I am not, but still am feeling. 

And, oh my god, so fucking lonely.
   
   Which is why tumblr has been great, because: So many spoonies! and some of them are old like me! (Because holy jebus, the teenagers.  Talk about feeling ancient.) So, less lonely: here I come.  And a lot of them feel left behind too.  So I don't feel so ridiculous about both loving the sight of my sister's gorgeous baby bump (Seriously? She's one of those adorable pregnant people who glow so much they nearly sparkle.) and still being so sad that it isn't me.  One of my other sisters recently lost a ton of weight by eating healthy and doing an exercise program, and I was so glad for her, and at the same time, I kind of wanted to punch her in the face. Because I've eaten nothing but cardboard for a year, and I've eaten 3/4 fruits and vegetables for the last 2 years, and I still can't stand up without wanting to die.  I miss moving my body and feeling good about it and not resenting everything it took away from me.  I miss trusting it.  (That's one of her big things, this hippie-crunchy sister of mine, "trust your body, it knows what it needs" which is almost so naive as to be cute, except for how my body apparently knows that it needs to lay on the floor a lot and never move, and make me feel like I'm constantly being crushed by the air? my clothes? gravity? So yeah: hilarious.  And rage inducing.) 
    So, yeah: it's been a rough couple of months - not without its rays of sunshine, of course.   In the forms of a family wedding and house guests who like to chat; a baby shower in the making; a couple of kids who grow like weeds having birthdays; a trip to the movies; a birthday trip out for me that included chocolate fondue and a book signing (which - heaven, right?); and even little things like a couple of really good books (a new JK Rowling under a pseudonym? Must acquire immediately!); coming up on finishing a really large (3+years) project; starting some new crafty things; making sisters laugh when they feel like they never will again; a pining Robb Stark (I'll post a picture this week); and learning how to apply makeup correctly for the first time in my life, via Youtube videos.
   
  But this is going to be a hard week, and I'm going to need as much sunshine as possible to make it through, so if you have any, please feel free to share in the comments.  Hope your weeks/months are going a little bit cheery-er, and even if they're not, at least you know you're not alone.  {God everything I'm writing today is like a therapy session: I'm sorry internet.  (I'm not really sorry - it felt kind of good to acknowledge that shit.)}

Plus also, my dad's been on sick leave/vacation for three weeks, and summer vacation starts Tuesday for the kids, so: totally fine!

So, one of my biggest problems with this space is that it is both awesome and pressure all at the same time.  Good pressure, but still.  Hoping to start up the daily blogging thing again come July, if only because it'll give me a reason to keep the door closed and the TV off.  But I'm working on some things, some projects, in the meantime.  Got stuff brewing. Doing a little bit of non-blog writing every now and then, even. But there's also been a bunch of family stuff (always), and a severe spoon shortage (also always), so I'm only getting through about a third of my to-do list. 

Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing?  This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It. 

I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think?   Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?

As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote.  Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)

So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again.  For the ... third time in under five years?  With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.  

All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.