“We are familiar with both ends of the spectrum: the short, acute infections and injuries of everyday life and the terminal cases of cancer, heart disease, or stroke that have a finite end. Chronic illness is somewhere in the middle, confounding and unfamiliar.” *

Welcome to all of you Blogging Against Disabilism Day readers ~ I hope this first of May finds you ready to read about a ton of things you wish you didn’t have to read about, to learn more about the people that make up our particular segment of the online disability community, and to (hopefully) feel like there’s issues out there that we can all do a better job of acknowledging and addressing!  (At least, that’s been my experience on previous BADD adventures: your mileage may vary, and this year might bring something completely different - but I’m excited to see where it takes us!)

My own post this year is a little bit different than some of the stuff I’ve addressed previously (you can see my BADD posts from 2012, 2011, 2010 (Oracle Post: commented on by none other than Oracle writer, Gail Simone! and is one of my favorite posts ever,) 2009, 2008, & 2007,), because I want to talk to you about a book I think might be right up your alley.

Friend of this blog (and this blogger), Laurie Edwards - author of the fabulous Life Disrupted:Getting Real About Chronic Illness in your 20s & 30s, and of the excellent posts at the blog Laurie Edwards, Writer (previously A Chronic Dose) has recently written a new - and extraordinary - book called In the Kingdom of the Sick, which is on sale now.  It’s an excellent book, that some of you might have already heard of (Laurie’s been doing a bit of a virtual book tour over the past month or so), but even so, I think it’s something worth discussing again here.

Let me first say, that it’s complicated for me to talk about this book, particularly in any sort of unbiased way, since I’m in it.  Quite a bit, actually:  Over the course of the last four years, Laurie’s been interviewing me, and asking me a bunch of thoughtful, challenging, questions - both specific and sweeping in scope - and then listening to me blabber on and on in response. She somehow managed to cobble a lot of my bits of nonsense together with the insights of other patients and bloggers and respected health care advocates, and combined them with years of dedicated research into the social, environmental, and cultural implications of chronic illness and come up with a sophisticated, well-rounded, and solid take on what it means to live with chronic illness in America. 

I’m going to talk about this book on two different levels - as someone whose personal story was told in its pages, and as just a reader, focusing on the compelling themes and discussions that Laurie manages to include in her chapters. 

On a personal level, I have to say how strange it was for me to see my story in print. To have my experience of illness not just represented truthfully and succinctly, but respectfully.  If you are a patient, like me, with often invisible/misunderstood chronic illnesses, you learn pretty fast that your word is not to be taken as gospel truth, that your story is to be heard with skepticism, that your experience of what it’s like to live in your body doesn’t translate to how people think it should be, and is therefore invalid.  But - as a chronically ill adult herself - Laurie has dealt with these attitudes on her own, and knows how important it is to make sure that she listened to and honored our experiences - I can only speak for my own interview process, but there was never a time when I felt as if what I was saying wasn’t being heard, and that really comes through in the final text. 

Which, for me, wound up being quite startling when I actually read the book: there’s my story.  All typed up and neat between the covers of an actual book - with my real name attached even!  (Which, considering I run an ‘anonymous-ish’ blog, gave me some pause about posting this here: but my concern is more that the people who know me in real life don’t find the blog me, not that the people who know blog me don’t find out who I am in real life, so I’m willing to take the risk.)  Even knowing my own experiences, they were hard to read: in some cases I was harsh on myself, or my family, and in others, the reality of my story is that it is often stark, as chronic illness often is - at least in this context.  So, it was sometimes hard to read about how doctors are dismissive of my pain, or how my family and friends (and teachers and doctors) so often discounted what I was feeling in favor of what they thought I should be feeling.  But the thing that Laurie manages to do so well here is incorporate all of the random pieces of my story and intertwine them with the stories of so many others, and place them in historical, social, medical contexts that make them so much more than just my stories: she makes them matter, in a way I hadn’t considered before.  The book is both my story and not my story  -  The author is honoring & using our anecdotes and non/mis-diagnoses and perspectives to discuss a more universal story, to show the patterns that surround the lived experiences of individuals & groups with chronic illnesses. 

This is one of the things that I found most fascinating about the book (and most relevant to my own experience of living with a chronic illness): that there are certain things that are universal to people living with chronic illnesses and disabilities - “We want science to give us clues when we’re surrounded by darkness, but we do not want to be reduced to impersonal statistics.” for example - but it’s still such an individual process. And that Laurie is able to blend and balance that so well is a credit to her skill as a writer.   

Laurie is able to see the big patterns - to identify and illustrate broad themes over long periods of time - but to make them feel real and relevant by using the true stories of actual, living patients.  By focusing on how the concepts of illness and patients have evolved over time, and using specific examples from those she’s interviewed, she manages to prove that illness doesn’t exist in a vacuum, but that the “stereotypes, assumptions, and challenges” that accompany our perceptions of illness as a whole, disability & chronic illness in particular are doing real harm (or, could be harnessed to give true benefit)  to real people in real time.  (A fact that will be well noted on your BADD journey today, I’m sure.) 

The example that most relates to my own life is that of the Tired Girls (a phrase coined by Paula Kamen in her excellent book All In My Head): those suffering with auto-immune diseases, invisible illnesses, migraines, pain syndromes & chronic fatigue.  Set against the backdrop of the 1980s, a time when (once again)  “the fit body became at once a status symbol and an emblem of an individual’s purchasing power, moral health, self control and discipline,” and our culture decided that being unfit was a moral failing, the stereotype of

 “The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better.  She is far removed from the cancer survivor triumphantly crossing the finish line in her local fund-raising event, surrounded by earnest supporters.  The Tired Girls have few cheerleaders, and, often lacking correct diagnoses or effective treatments, wouldn’t even know how to define what or where their finish line is.”

 Later on, she continues:

 “The issues apply to chronic illness in powerful ways.  For one there is obviously no finish line with chronic illness, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so.  Without that finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases, no backdrop of success with which outsiders can judge our journey.  Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are. … It is a murky gray space...”  

What does survivorship mean to someone who will never cross a finish line, who just has to make it through the next day? What does it mean to live in a society that embraces the power of fitness and an ideal of “you can do it if you try hard enough”  for groups of people who just can’t live up to that goal of perfection- and how does that effect not just the way they are treated by the culture they’re living in, but by the medical establishments that exist in that culture;  It’s an area that’s often overlooked, and I’m glad to find it here. 

Again and again, Edwards uses words like “unpalatable” “Antithetical” “disdain” “blame”  “untenable” “Overreacting”  “dismiss” - in her discussions of how society, the medical world, and sometimes even the patients themselves view people with illnesses such as  Chronic Fatigue Syndrome  & Fibromyalgia, and - as a sufferer for 18 years -  I can only agree that these are still the pervasive attitudes.  She talks about the importance of medical research (and funding - or lack of) as “critical to better acceptance and better treatment options”, as anybody with an underfunded, misunderstood disease can attest to. 

There are also compelling discussions into the intersections of gender and illness (which she also touches on in this recent New York Times article about Pain & Gender); environment and illness, class and illness; and how much of our experience of illness relies on the time and place in which we are living.  For example, most of us in America right now have the privilege of living in a ‘post-polio’ time, but less than 70 years ago, that would not be the case.  What attitudes and values from the post WWII era of "irresistible progress, a time when it seemed like science was on the brink of curing so much of what ailed us..." and yet "chronic conditions that were somehow beyond the reach of medical science - would appear that much more unpalatable" are we still carrying over and living with today - in our daily lives and in our medical establishments? How much of what we now understand about diseases like Multiple Sclerosis or Epilepsy would be shocking to someone from the early 1900s?  And what will we learn in the next 10-50-100 years that will change how we view the misunderstood illnesses of today? How do new technologies that will help us discover the inner workings of the brain, or processes of pain or genetic implications of illness, clash with the ever-present theory of self-improvement and moral judgements surrounding things like weight and lifestyle choices? Somehow, she manages to touch on all of these topics and many more.

The book is definitely, as the subtitle proclaims, a “Social History of illness in America”  - peppered through with patient interviews and perspectives are the broad trends and social constructs and how they inform our experience of illness - both as patients and as observers/outsiders. 

She looks at the Disability Rights movement in the larger context of the times - as emerging from the basic principles of the Civil Rights movement, and the Women’s Rights movement - and how it sometimes has come into conflict with both of those - If you’ve spent anytime on the Internet, then you know that not everyone’s feminism is intersectional, not to mention that if women’s right’s activists were arguing for equality, and certain illnesses were keeping women from being able to claim that equality, well, there would obviously be conflict.  Also true is that chronic illness, in terms of the disability movement as a whole, is not always welcomed and appreciated by the decision makers: and that the needs of people with chronic illnesses both intersect and diverge from the ‘mainstream’ disability rights movement (if there even is such a thing any more).  As Laurie puts it “Invisibility affords many opportunities for alienation.” 

She also provides one of the clearest perspectives about chronic pain I've ever read.   And doesn't shy from mentioning the judgements that often come attached to having something so debilitating that people - including doctors -can’t see or often measure reliably (and therefore don’t trust) -

“Chronic pain, especially severe chronic pain, is so encompassing and omnipresent it makes concentrating on anything else other than it nearly impossible.  Chronic pain can make it excruciating to engage in physical activities, keep up with a regular work schedule, or even leave the house.  Over time, chronic pain erodes so many aspects of the patient’s identity that it sometimes seems all that is left is the minute-by-minute experience of simply surviving the pain itself.  It makes the threads of everyday life blurry and out-of-reach, yet pain becomes the narrow, sharp lens through which everything else that matters is filtered.  This is the reality behind the statistics, the jobs left behind, the co-pays for painkillers that invite as many problems as the fleeting relief with which they tempt. .. It’s an untenable situation: patients are considered lazy or indulgent if they remain housebound, but should they manage some activity or productivity, then their pain can’t be as severe and exhausting as they claim.  Here again we see the contradiction so common in the social history of disease: the absence of outward physical manifestations of illness somehow negates the actual experience of having it.”

 and later

“Widespread pain conditions like fibromyalgia or CFS are especially social conditions, since their symptoms have a direct impact on a patient's ability to maintain various roles and identities.  Ties to the outside world via employment, family obligations, activities and hobbies, and social engagements are whittled away, and physical and psychosocial isolation increases.  Add to this process the fact that their symptoms and complaints are routinely viewed with skepticism from physicians, loved ones, or both, and the alienation of individual patients takes on more momentum.  In The Culture of Pain, David B. Morris writes that pain “cannot be reduced to a mere transaction of the nervous system.  the experience of pain is also shaped by such powerful cultural forces as gender, religion, and social class … Even when it just grinds on mercilessly, pain, like love, belongs among the basic human experiences that make us who we are.”” 

Right?  How much do I love that somebody gets all of that?

I’ve managed to include just a few of my favorite quotes out here, but trust me - there’s a million more in the book (see attached photo with number of sticky notes in my (!signed!) copy: and I promise that I did not sticky note myself).  I didn’t even get to mention the rise of consumerism, survivorship and personal responsibility, or the emergence of social media as not just a place for activism (shoutout to #BADD), but also a place for community building, patient research and all sorts of evolving questions about the role ‘participatory medicine’ will play in the lives of current & future patients.

 In the Kingdom of the Sick is comprehensive: it’s super compelling to anybody who’s interested in how disabilities and illnesses have been and are now perceived in our culture, and how that might change moving forward, and is incredibly relevant in a world where nearly everyone is impacted in some way by chronic illness (if you don’t have one, I guarantee you know someone who does).

 Highly, highly recommended, and hats off to the wonderful Laurie Edwards, who I’m so glad I get to call my friend.

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I'll be back at some point with my favorite BADD quotes round-up: I hope you all are hitting as many sites as you can, and leaving as many comments as you can (Trust me, they really matter!)  Speaking of: please let me know in e-mail (bbckprpl@gmail.com) if you are having trouble with the comments on my site: Blogger does not always cooperate, and I've tried my best to shut down the captcha, but it doesn't always stay off.  Thanks for reading! 

*Laurie Edwards, In The Kingdom of the Sick, p10

Hanging out with my Sasquatch

Can't think of a word to encompass how overwhelming my pain is today.  Basically, I need to be floating, touching nothing with even the tiniest inch of skin, and - since my levitation skills are nil - that's not going so great.  I'm loaded up with drugs, in the hope that I'll just drift off for a little while, laughing at the idea that chronic pain patients use meds to get high... I'm using mine to keep me from skinning myself or following through on jumping out the window, just to feel something other than how bad this hurts.  My skin is the wrong size, I can literally feel my blood pumping, as if it's bruising me just by rushing through my veins.  I hate that there isn't a word big enough to cover how much it hurts; to compare it to 'hurting' at all seems like telling you a flood is the same thing as a teardrop - hurting is the only thing I'm doing at this point: it's who I am.  Existing, just breathing my way through it.  And all because of the stupid steroids, which, thanks for saving my life and all, but maybe next time you could do it in a way that makes me want to survive?  How is it that a drug that helps people with some kinds of pain somehow cause my nerve endings to act as if they need to interpret every input at DANGER: EXPLOSION levels.  I hate how quickly I can go from 'a little bit sick' to 'every part of your body is consumed by pain and fire', and how there's not a damn thing to do about it except to wait for it to pass.  Gonna get back to that, the waiting.  Here's some other people, making me feel more human, since they're pissed off at their pain, too.

"I have no patience these days with the Nietzschean cliché, ‘That which does not kill us makes us stronger.’ I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is. All the worst pain does is reduce us to our most primal animal. We want it to stop. We want to survive. It short-circuits any sense of self, diminishes us to a bundle of biological reflexes." Dana Jennings, Pain Beyond Words

“Pain is the Sasquatch of science, never witnessed, only endlessly speculated on.” Marni Jackson, Pain: the 5th vital sign.
 

"When I get caught up in the web of feeling, tied up til I’m completely ensnared in those slender threads of pain—–that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make?  Kiss it and make it the same.  Come get me and make me okay. I’ll wait here while we figure out why I’m fated to take it on any and all of my chins, What am I missing that makes me unlike what they call solid citizens?  What caused me to be a liquid citizen like myself, with the talent to find the winning part of losing, the talent to take that searing feeling of failure and writing it out til it doesn’t win…….?"   Carrie Fisher

Heading to a big family shindig

tonight.  Doing my best to coast along on my meds as best I can.  Not working all that well, as having company is a bit of an additional (but awesome) strain.  I am so enjoying having heartfelt people in the house.  Not overly happy, not upset, just genuine people.  People I love and who love me, and who don't totally get it (seriously, Aunt Pam: stop with the patting!), but who try really hard and are on vacation and will stay up all night playing games and talking about whatever we feel like - heavy things and nothing things, and everything in between - and just breathing.  Of course, my dad is still here, and he's like this heaviness over everything, but I'm doing my best to ignore that as well.  I can tell it's a tad bit uncomfortable for them, but I'm not going to be able to just push everything aside and pretend all is fine and dandy, and I told them that.  So, we're grown ups, we're not all getting along, we can be civil, and we're working from there.  In the meantime, aside from that, and the fact that I feel like I'm being given electro-shock therapy (stupid new meds) AND being trampled by horses (just my regular fibro feelings), I'm having a perfectly lovely, agreeable visit.  They've gone off on a Fenway tour, which gives me a chance to get some breathing time in, and I'm giving myself a two day pass on the NaNo, which means a lot of catch-up come Tuesday, but less pressure today tomorrow (since I know my brain is going to be worth nothing after all the drugs I'm going to need to make it through this wedding tonight).  So, talk to you tomorrow, ladies and gents, hope your weekend is going smoothly too.  :) 

As if I wasn't doing enough

I started a new med last night.  For pain (of course).  So far, all I'm feeling is that my pain is turned up a notch, but I'm hoping that that's a result of an overextended weekend, as opposed to a medicine that's supposed to help me.  Of course, this would not be the first (second, third, or hundredth) time that instead of making things better a new med decided to make things worse, so I'm also keeping an open mind.  Fingers crossed, mind open, and Zack on speed-dial.  That's the way I'm making it through this Monday, folks. 

Insomnia, Devil: same difference.

You guys?  This insomnia is so massive that I'm almost impressed.  I feel like this is just another example of how my chronic illnesses are combining in a manner created to drive me over the edge.  It's like they all fit together just so - not interlocking and meshing like a nice puzzle, but all jagged edges and hard corners and raw spaces that rub up against one another till they bruise and bleed.

 This one requires that I exercise; that one makes exercising without passing out a near impossibility. 

This one says carefully plan meals & eat healthy; that one says have no energy for cooking, no brain for the math required, and a nausea so lasting you might as well be living on board a rolling ship. 

This one says wow, you're super-emotional and could really use a hug; that one says a hug will cause you more pain than ripping off your own fingernails. 

This one says be super exhausted for every minute of every day forever; that one says, and also don't even think about sleeping.

They just all mesh so nicely together, don't they?

What with all of the insomnia, especially since I had been making small, tiny, minute improvements in my sleep over the course of the past few months, and a pain flare up that came out of nowhere (hello, ridiculous barometer: I'm wondering if you are not a main culprit here), I am beginning to feel like I can not handle things.  Easy things like getting out of bed and washing off an apple to eat it (instead I find myself sitting in the kitchen staring aimlessly into space and wondering what the hell I went out there for), harder things (go ahead and ask me when I last showered: I dare you), and impossible things (lunch tomorrow with Grandmother and some cousins I haven't seen in three years? Never going to happen!)  - they're all just sort of accumulating in a little pile over here, that I'm labeling "Hell no, but thanks for asking!"

It's hard to explain what the combination of CFS & Insomnia is really like - one of those 'you have to be there' kind of things, I guess.  Because everybody can't sleep sometimes - a sleepless night now and then is just a part of life - and so people think they get it.  But they don't.  It's like being underwater, like drowning, almost.  You know you need to push up towards the surface and get air, take a breath - get more than 5 minutes of sleep at a time - but you don't have the energy too push off in the right direction and your arms and legs won't work together for some reason, and your brain says helpful things like "now is a good time to panic, only do it as slowly as possible, if you please", and you wind up just floating away again, hoping the air - the SLEEP - will come and get you on its own.  Parents of newborn babies come the closest to understanding it, I think - the sheer levels of exhaustion you can reach, which you didn't even know existed until right this moment.  At least, that's what they tell me.

 The other day, after about 37.5 hours with no sleep, and with my FM pain level reaching "i will claw my face off now" proportions, & having tried every 'sleepytime' trick in my repertoire, I was just laying on my bed, curled up as best I could, waiting.  And every minute that ticked by made me more angry, made me feel totally out of control, made me want to track down every single doctor who'd told me to 'set a sleep clock' or 'try sleeping with the windows open' or how exercise would make my pain go away and stab them somewhere vital.  Not that I would, but it seemed like a good idea, just so that I could say something equally meaningless like "try not to get stabbed, because then it won't hurt so much."    It's just ridiculous, the things you hear when doctors have no freaking clue what your disease is/means/feels like. 

Anyways, to avoid a similar fate tonight, and because I hope some people are still reading here, even if only occasionally, here I am at 3 am typing away, hoping that my words make sense (and being eternally grateful for spell check, because holy jebus, if you could see some of these errors).  I'm trying not to be angry that the rest of you are sleeping peacefully in your beds, but not angry is about all I can manage: don't be jealous is definitely asking too much of myself.  But being green eyed is understandable, I think, given the circumstances.  Next, I'm going to go attempt to bake cookies, because if there's anything an exhausted insomniac should do at 3 in the morning, it's play with fire, while attempting to make an edible food-type product, completely unsupervised. 

Well, when I put it that way, it doesn't sound like the wisest decision I could make, so maybe I'll just open another book instead.  Or order something off of the internet.  Those sound like good options, right?  Aw, what do you care? You're probably snoring away anyways, you lucky bastards.  Well, I promise not to hate you too much, if you'll come back soon. 

Where have I been?

I see that it's been nearly a month between postings, and I didn't want you to think I'd forgotten you... nearly everyday I have a "You should say something to the nice blog people" moment, but it isn't accompanied by the energy and effort that's been required. There's a lot of reasons for that - health issues (surprised?), other people's health issues, summer with the kids, life in general. And there was SisterCh's wedding, which was nearly two weeks ago, and I am still recovering from it.

The wedding itself - the whole getting married part - was wonderful and sweet and short and simple, and I couldn't be happier for my sister and new brother in law.


Everything else? The planning and the crafting and the being the peacekeeper and the living in a family of 'always lates'? Was capital K Krazy. It was like drowning in a pool of anxiety for days at a time, and not knowing how to come up for air... as if I had dove into the deep end of an actual pool and someone through the plastic pool cover on while I was floating underwater: It felt like I spent a lot of time frantically clawing at it, digging for a way to surface. I don't exactly know why it was like that - some of it was me, some of it was other people, some of it was those stupid health issues I was talking about, and some of it just falls into the 'holy shit: this is my life?' category - but it was heavy, and - as much as I love my sisters & love to be able to help them out - I am so glad that nobody else is engaged right now. We'll talk about it more later, for sure, since I've been dissecting it in my head ever since, and trying to learn from my mistakes, but I'm too exhausted to go into it in detail tonight.

I am once again in recuperation mode, but there's a lot of unavoidable stresses that are making that pretty difficult. I'm getting there, though, slowly but surely. In the meantime, how about a picture of the happy couple, just so neither of us leaves with the impression that it was a completely horrible experience? (It really wasn't: I need to do a better job explaining soon, so it doesn't seem like it. Promise it won't be a month before I come back!)

(PS - Spell check? If Unreedemed is a word, why isn't unredeeming?)

I spent the week feeling like I was in the middle of an ocean, floating and bobbing along, attempting to eat crackers and drink ginger ale without having them revisit me. That's what I get for trying new drugs. And now that that is starting to truly pass (hey: I ate real, non-cracker foods today... this is a plus! Except do you know what happens to your stomach when you try to put non-cracker foods in it after a week of crackers? It does not take kindly to the intrusion, I can tell you that!), I get to have huge emotional upheavals instead! Hooray!

Seriously. Sometimes I think moving to Australia* might be the wisest choice. I'm starting to think of aliases, see which ones fit me best. I don't want to talk about it again, right now, but suffice it to say that I have both cried and cursed more in the last 8 hours then I have in the last three years. Easily. If you are guessing that the drama is somehow sister related, you would be correct. You would also be correct if you guessed that there was no actual resolution (peaceable or otherwise) /conclusion achieved in the final analysis of the day. In fact, while I think some very important things were said, I'm not sure if any of the important things that needed to be accomplished were accomplished. But I tried. God almighty, I don't think I could have tried any harder, and that's all anybody can ask of me.

By "anybody", I of course mean 'anybody but me ', since I apparently am not satisfied with having done my best, but instead am upset that I wasn't able to achieve miracles and (our little) world peace while I was at it, but that's just because I am kind of a jerk to myself.

I am going to go and find something completely unredeeming to watch on television, or some cracktastic type of book to read, or a computer game that will devour my soul for a few hours. (Or perhaps all three of those things at the exact same time.) Anything to not be me for a little bit.


I'll check back in with you all soon, and hope your weekend is full of bright spots that don't include crackers or drama (unless crackers &/or drama are your idea of happiness, in which case, have at it!)


*Bonus points for all children's lit majors who managed to find the Terrible, Horrible, No Good, Very Bad portion of today's post.

Postage Stamp Island...

As much as my brother-in-law might laugh at me for attempting to rap (or, more accurately 'sing a rap song',) my current life resembles nothing so much as the line from Grandmaster Flash's The Message "Don't push me, cuz I'm Close. To. The. Edge. (I'm trying not to lose my head)"


My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.

This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.

So there's that. But it's not just that: I feel near the edge on just about everything.

While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.

I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.

I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.

And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.

The edges are still there though, and my island's getting smaller.


Print Available Here

*Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.

** Using the term 'shout-out'? No, you're really not.

Let me tell you something...

(said in my very best Fire Marshall Bill voice): I just don't know what to tell you.

My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or flashing through like lightening bolts or scrolling through like a news crawl - "This just in: You are Still Hurting! And reports are coming in of even more affected areas - Devastation spreads! Stay tuned to this channel for further developments."
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.

So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.

I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.

I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)

The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.

I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.

On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.

As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.

She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.

She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.

It makes me long for the worries of ten year old me, that's for sure.

In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.

33 days post op,

and I am starting to finally feel like I might actually be a human-type person again. I'm not springing into cartwheels, or feeling the magical special cure that I had, deep down, obviously, been hoping for, but I no longer feel as if someone decided to whack me in the face with a mallet, while at the same time letting some sort of giant lizard claw its way down my throat. You can imagine that this is a bit of a relief.

I managed to catch, in these 33 days, at least one sinus infection (either inadequately quashed the first time and capable of rebounding, or a party-bug who invited a friend over; impossible to tell) and a case of thrush that made me want to rip my tongue out and use sandpaper on it. Thankfully, the thrush has cleared up, and the infection(s) are on their way out as well. (She says, trying not to jinx herself this time.)

So I'm going to talk a little bit about a couple of things now, and I'm going to warn you that the very first thing I'm going to talk about is exceedingly gross. As in "Are you really about to tell the internet that...?" level gross. But here is where I talk about things that I can't discuss in real life/make my family understand, and so, you lovelies have a bit of forewarning that you might want to skip item #1.

Item #1: Every week since my surgery (and twice the first week immediately following the surgery), I have had to go to the ENT surgeon for a check in. During these check ins, he pokes at my face a little bit, looks up my nose, down my throat and in my ears - in short, all the things you expect the ENT to do. And then things take a dramatic turn for the worse, and I break out in the kind of flop sweat usually only experienced when the dentist turns around with that huge needle in his hand. Luckily, the ENT does not start poking me with needles, but, rather unluckily, he instead decides that now is the time to insert things up my nose.

UP my NOSE, people. My very tender, and much abused nose. First, he sprays a little numbing stuff, which is about as useful as tap water would be, and then he uses a long thin strip of cotton ball, doused in decongestants, and his looooooong metal pliers, and he stuffs the cotton ball up my nostrils. He leaves it there for a minute and disappears behind me, while the medicinal tasting decongestant drips out of my nose and down the back of my throat.

The first time this happened, I was a little bit shocked: I assumed that when he said he was going to use a decongestant, that he meant a nasal spray. And that was going to be bad enough, because my nose was already swollen and sore, and now he was going to spray stuff up there? Bah. So I was sitting there all shocked and drippy, waiting for him to take this gross stuff out of my nose when, all of the sudden, there's an unexpected noise behind me. A mechanical noise, a little hum that is entirely out of place. And then things go way downhill, way too fast.

Because the mechanical humming noise is coming from some sort of vacuum, not unlike an elongated, metal version of the doohickey that the dentist uses to suck spit out of your mouth during a cleaning, and the ENT is telling me that this damn thing is going up my nose to "clean out what's left."

Are you freaking kidding me??? This was not mentioned during the numerous pre-op discussions we had about surgery and aftercare; This was not mentioned in my aftercare instructions; This was not mentioned anytime during the previous 15 minutes I've been sitting here talking to you: NOW you are telling me, as you approach me with that goddamn thing, that you're going to suck stuff out of my sinuses? I am so not on board with this.

But, what choice did I have, really, since this is part of the after care - I'm going to go through all the pain of the surgery, and then have it be a waste because I didn't do the necessary follow up? I don't think so. How bad can it be, really?

Oh, it can be really, really bad. *I should put a disclaimer here that this was my experience, and the whole sucking out of sinuses might not be a big deal for other people: I can't really say. Except for another guy who was having the same surgery/procedure done on my first post-op visit who yelled really loudly from inside the room while I was waiting for my appointment, so he obviously didn't enjoy it either (if only I had known why he was yelling before I went in...). I can only say, that for me? It was a gigantic deal. Not just because I was already in a lot of pain, although I was, but because, to me, it feels like drowning.

The sensation of not being able to breathe through your noise is bad enough, but you add in the forced pressure of that little vacuum, and the fact that you can feel it not just in your sinuses and nose, but in the back of your throat? And it adds up to a completely overwhelming and painful experience. I cried, the first time, and (Mum told me later) was also, from the waiting room, quite audible in my distress. I cried the second and third times too, and I'm not even the tiniest bit embarrassed by that fact. (It was a little bit less traumatic the last two times, thankfully.)

It hurt, and I am already hurting enough.

But it was the panic that it caused me that was most distressing... the doctor actually told me to "breathe through your mouth" (as if I had any other options) "or you're going to have a panic attack". That is because you are cutting off my air supply, and my body, for some reason thinks this is a bad idea. He also appeared shocked that I would find this so upsetting, only adding to my impression of him as completely out of touch with reality ("7-10 days and you'll be good as new!"; "No patient has ever had a sinus infection so soon, post-op: are you sure that's what it is?"; "You should chew more gum to help stretch those muscles, did I forget to tell you that?").

The only good news is that I now don't have to go back for another month, baring additional issues, and that time, he may not even have to use the vacuum. Fingers crossed! End of totally disgusting and barbaric Item #1.

Item #2 - I have missed out on a lot of things in the course of the 33 days: a cousin's wedding (which apparently included much celebrating), my birthday, a college reunion I wasn't going to go to anyways (but I would've liked to make the my-girls dinner pre-party), Lil Girl's end of school celebration, No Longer Youngest Nephew's school report (which I have never been invited to before :( ), and more than a bit of family drama that I'm still trying to catch up with. Everybody in my family had issues during this period, and I feel like I am a page or two behind on the stories, which is a feeling I truly hate. I also feel like this lag in my understanding of things has caused new drama, which I have to figure out how to fix, but can't till my brain is back at full power, which sucks. This is one of the things I tried to factor into my decision to have the surgery - knowing I would be so far behind/out of the loop, and trying to make it be ok, but I absolutely hate not being there for people when they need me (and we can talk about why I don't expect people to show up for me when I need them some other time, thank you very much). It has been hard, playing catch up, apologizing for the gaps and lapses, the gaffs and digs I've delivered unknowingly. Or trying to, at least.

But at the same time, I'm trying to be realistic about this - I had the right to do something that, hopefully, is going to lead to a real improvement in my health. It wasn't selfish to do this, even if I don't get the outcome I wanted. Or, if it is selfish, only in a good way. This is one of the things I have decided to work on, about myself - that I don't cut myself enough slack about important things. Yes, it is vital to be someone that my family and friends can depend on, and it stinks when my health issues get in the way of that. But that doesn't mean it's not something that people should try to understand, and that doesn't mean it's something I should feel badly for (at least, not excessively so). So, I'm working on that. It is much harder done than said.

Item #3 I would just like to state, for the record, that I am through thinking about my weight. Because I ate nothing but soup broth and mashed potatoes, slush, bananas, and jello for, let's say 27 days, discounting the first two days (when I could only eat slush), and the last four (when I've been expanding into other, actually needs to be chewed types of food). And I think I gained weight, to be honest with you. So if I can't lose weight on three weeks of vegetarian, non-chewable mush, then I'm just not going to lose weight. So I better figure out how to like the size I am right now.

I think that's about it for now, before this post turns into a novel. I'll be back pretty soon (certainly more frequently now), and we'll talk about something completely different, won't that be nice? Please also know that I am, slowly but surely, catching up with my Google Reader (yay: The Collective is back in my Google Reader!), but it's taking me a while. If you have clicked through a new comment of mine on an older post of yours, welcome! Sorry to be so late to the party! I'm getting there.

"I wanted to run away that day. But you can't run away from your own feet."*

One of the things I've always said about my particular battle with chronic illness is that - for me - it's like having all the downsides of being pregnant, without any of the benefits. When you talk to women about some of the worst side effects they encountered during their pregnancies, you hear a lot of talk about exhaustion (check) or their new aches and pains (check plus). I've known pregnant ladies who found that they were sensitive to odors (check plus), others whose favorite foods were no longer edible (check). There's the nausea (check), the heartburn (check), the weight gain (check), the loss of balance (check), the increase in number or intensity of headaches (check), the insomnia (check plus) and the resulting "mommy brain" (what I like to call brain fog) . I've got all those symptoms (plus bonus symptoms like a ridiculous lack of immune system & muscles weaker than wet noodles), only I don't get to have any of the fun that goes into making a baby or the fabulous new little person to care for afterwords.

For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.

I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.


So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.

Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.


Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.

And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.

I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.

And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.

*Cloudy with a Chance of Meatballs

It's been about a week and a half,

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

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

So, onto today's post:

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

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

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

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

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

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

Simple, right?

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

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

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

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

" All night hearing voices telling me That I should get some sleep Because tomorrow might be good for something"

If you're one of the lucky people who have trouble sleeping, every night you eventually get to the point where you give up. Where you just say "Fuck it" and roll over and get on with your day.

When that time comes as early as 3:15 a.m., it tends not to bode well for the rest of your day, but you know it's as good as you're going to get.


Night has turned into a dreaded time for me. My fevers rage, for no reason, and I sweat and get sticky. The aches of my day must be accounted for - they make themselves known in ways and places that seem impossible, but are normal to me. I toss and turn - top to bottom, back again - and twist myself up, inside and out.

When I'm 'sleeping', it's like being barely under the surface - feeling every twinge, every twitch; hearing every sound; gluing my eyelids shut against the dawn. I struggle to stay 'asleep:' to go deeper, to go under, if just for a few minutes. I want to claim just a few blessed minutes of peace for myself. But I'm just aware enough to panic if the sleep starts to get real, as if I might drown in it, and I freeze in terror at the thought. I'm stuck there, in this half-sleep state, unable to surface, unable to sink.

Which is when the fun really begins. The debates (with myself) about sleeping pills, which really only make me drowsier, which is not something I need help with.
The deep breathing/meditation routine I've got down pat, but by the third time it gets old, and I'm still not asleep. The internal battle over windows open or closed/blankets on or off/pillows up or down/radio babbling or silent. And, finally, the frustration gets to be too much, and the light goes on while I grab for my book, or the TV clicks, blue light floods the room.

Or I come here, where I ramble on about not being able to sleep, and question whether it's coherent enough to post.

“Chronic suffering creates its own chronic sense of time – a thick, stoical knowledge of how long a day takes to be digested, and of the secret folds and crease of time that a sleepless night conceals. Each portion of the twenty-four hours has its own touchy mood as well. The hours before midnight are sometimes hopeful; the darkness seems fresh, and almost like sleep. Even the minutes between one and two a.m. have their mild drama, the sense of a solitary tryst with the self. And in the middle of the night, the need to be brave for the sake of others is mercifully suspended. Everyone else is asleep. Bodies are at rest.

But the time just before dawn requires serious negotiation. These are scary, bottomless hours. It’s as if every night at four a.m. you have to sign a new contract, with many little riders, agreeing to wake up the next day. And this is when the prospect of going under becomes seductive. Struggle seems bogus, the work of a bad actor. At four a.m. fear and the imagination take over, interpreting every new symptom as hemorrhagic stroke and heart attack. Tumors are nocturnal. Like a dog with a bone, the pain runs away with you.

Then there is the loneliness. No one else is up at these hours, and if they are, they don’t want to be. Partners brew tea, droop, and chain-yawn. Even books seemed closed and shuttered for the night. Late-night radio channels voices from the other side – a kind of wacky Australia of exiles from the day light world. Only wolves, ghosts, new mothers, jazz DJs, and people in pain inhabit this corner of the night.
At four a.m., you have no choice but to lie there and accept the weight of time. Lie submerged in it like a boulder in a cold stream, half in the water, half breaching the air. You are bestride two elements now, like an artist in dialogue with the self. Pain has split you into the subject and the object, where, like Emily Dickinson, you can observe yourself decked out in the coffin of the moment.” Marni Jackson, Pain: the 5th Vital Sign

And my alternatives would be....?

These are the kind of nights that you almost believe you made up , until they happen again.

Back when I actually talked to people (besides my family, who are just about the only people I talk to right now), eventually the conversation would turn to my illnesses and how I 'cope' with them. Some people would say things like "I don't know how you do it" or "I could never do it," which always seemed particularly wrong thinking to me because it missed the point that you don't get to pick whether you do it or not: These are the circumstances you have to live with... so get busy living. By whatever means you can.

So that's what you do. That's what I do. I just get through the days as best I can, using all the means at my disposal to try to make those days resemble - even ever so slightly - the life I want to have.

And sometimes I feel as if I am doing a pretty good job at managing things, that I have things as under control as they are likely to get, given the circumstances. That I am squeezing out bits of happiness where I can find them, avoiding unnecessary drama as much as possible, searching out moments of quiet and connection and the closest thing to peace that I can find in the chaos that is my life.

Tonight is not one of those nights.

Tonight is one of those "oh yes, your pain can get worse" nights. A night where I would've labeled my pain a 10+ on the pain scale, but I can still string words together in some semblance of sentences, so it must only be a 9+ instead. A night where I curse every medicine I take as phony, every pain management technique in my arsenal as a dud, every attempt at distraction as weaker than bringing water balloons to put out a forest fire.

And it's the steroids. I 'forgot' that steroids kick my ass. Actually I didn't forget, I just ... blocked it out, that things get this bad. Imagined that I was misremembering how bad things actually can get. I was hoping that this time they wouldn't, since I didn't have any choice but to take them. I only take them when things are desperate: when my tonsils touch and try to suffocate me, for example. In this case, because my infection went untreated for so long ("It's just fluid in your ear!"), the sinus/double ear infection raged inside my skull, causing havoc. Fearing a systemic infection and hospitalization (Zach knows me too well and was sure to explain just how serious this whole situation was, using words like "IV treatment" and "long term danger"), I conceded and agreed to take another course of the steroids.

They were a different kind then last time, a different schedule, a different dosage. And yet, the results were the same: just me and the pain, in the dark, each cursing the other.

I feel like my back has been trampled by horses, and even the slightest pressure - I am wearing a sheet, and it hurts me - is unbearable. From the crown of my head to lower than even the lowest low-rider jeans would sit, it is as if the skin has been peeled off and what's under has been flayed, as if my brain somehow turned all the pain receptors to 11 and let them do their thing.

I know if I could see my back (which, at this point would take some ingenuity), that it would look fine. Normal. Not as if wild mustang has bucked and kicked at it all night long. It will not have the deep blues and purples that you'd see after someone launches themselves down the stairs, or from an airplane, parachute-less: there's no bruises blooming to map out my pain... and yet it hurts more deeply and more completely than I could ever explain.

It's not just my back, that just happens to be my worst area, the section of my body where there's no safe patch, no less painful zone. My legs, for example, have 'tender' spots, but there are also places - the side of my calf, the top of my foot, my pinky toe - that aren't battered and busted. On my back, there is no quarter.

Pain can do remarkable things - it can make you roll over, make you shake, make you vomit, make you cry, even make you see the sun rise - and I work so hard at trying to tame it, trying to control it ... even just a little so that it doesn't control me, but on nights like this I feel as if there's no point - sometimes pain just wins.

And that makes me think about all the people who say how they could never do this, because I wonder why they think any of them would get a say in the matter.


I can't do this either. Except that I am. Except that I have to. Because there's no other choice.

Little update...

Thanks for the well wishes, guys: I really appreciate it.

It's been kind of crazy here this week, and I'm feeling more than a bit worn out today. So far the post-move flare has not been ferocious, amping things up only a notch or two as far as pain goes. Which, of course, is horrible. If your pain goes from an 8 to a 9, that's a big deal. But, I had so feared a 10+++++, that I think I'm dealing pretty well with what I've actually got.

I do have a comfy, cozy new bed to retreat to, which has been helpful. (I even wrote a post about it, and if I can get my crap together long enough today to take a picture, I'll post it.) I am slowly adjusting to the new smells and sounds, which has been difficult. As far as sound goes, it's mostly just a lot of "Holy crap - who slammed that door? Is that someone coming in the porch, or just the floor creaking? Why is the bathroom right next to my room?" and new street noises like fools who set off fire works after 10:00 at night. Not so big a deal, really.

But the smells, oh the smells. There's the "odorfree" paint, that STILL smells even though it's been three months. Yes, it is less than it would normally be, but don't try to tell me it's odorless... there's a smell. There's the ocean breeze that occassionally makes its way up the hill, my neighbor's insistance on using some sort of stain on his new steps, and then there's the mystery smell, that seems to come in only in my window. UGH. My current theory is that the previous owners buried a body in the side yard before they moved, and that is why there is a cup of vanilla extract sitting on my windowsill right this minute.

Smells, the front porch 'ramp' (that is steep enough to qualify for a mountain), and the bathroom (No sink? Toilet in front of the door? Haven't you people ever used a bathroom before??) have been my biggest challenges so far, but I am settling in, slowly and surely.

Mum and I have been working our way through this season of So You Think You Can Dance? - don't tell us who won - and adding grab bars & curtains in the bathroom. I've already figured out that the den gets the best breezes and the front porch gets the least amount of sun after 10 AM.

I know that some of our neighbors have children, some have dogs, and we all need a new sidewalk. I know that the library is only 1/2 accessible, and the half that is are the children's rooms. And that there's only one local pharmacy that's open 24 hours (and, of course, it's not mine).

I'm finding that the house is awfully quiet a lot of the time, and that, because it is so big, people can disappear. I am not used to being so far from everyone - in our old house, there were 7 rooms - all on one level, all close together. You could hear people talking in every other room, if you wanted to. Here, there are 7 rooms on my floor, and now there's this whole upstairs that I've only seen on video, a front porch and a back porch, with doors and steps I can't climb. There's a basement and a garage, and a yard I haven't checked out yet.

I'm both excited that there's so much left to explore and overwhelmed, because who knows when I'll get to it.

I'm trying to approach it as if I have all the time in the world - trying to change my attitude from this being 'the new house' into this being our 'forever' house. If we're here for the long haul - the foreseeable future, let's say - then I've got plenty of time and I can just be calm about it. Of course it's unsettling to be living out of a suitcase, or to be faced with piles of boxes that you have to sort through, but I'm really trying to enjoy the process here - and that does not come naturally to me. It's a real effort, because as much as I'd like to be DONE, I have to just take some deep breaths and try to let things unfold at a pace I can handle.

We'll all see how well I do.
As always, thanks for caring.

Always surviving

Today, my aunt packed up and headed back to Ohio at some ungodly hour of the morning, and after she left, my Grandmother knocked on the den door, came in and sat beside me on the bed. "I just said good-bye to Mac", she said, her voice low and thin.

I put my head on her shoulder, she put her head on mine. A few minutes later, she whispered "I just don't know if I'm ever going to see her again."

She was crying as she said it, and her tears made me want to flinch they were so heavy.

Then her hearing aid whistled at us, and she collected herself, pulled herself back in, saying that she shouldn't be leaning on my shoulder, because it hurts me.

As if I care.

But she bustled out, and I knew she needed to be alone for a few minutes: Because sometimes you just can't cry in front of other people; because sometimes you're afraid you might not be able to stop.

I sat on the bed, in the dark early morning, with the stupid birds chirping away outside the window, and the light trying to creep in through the cracks of the shades, and I thought about what it must be like to have to say goodbye to your child, never knowing if you'll see them again.

Of course none of us ever knows, but we each have our own false comforts of being young, or healthy, or knowing that you only have to wait till tomorrow, or that you're right down the street, or that you've had all your shots.

I thought about how scary it must be to have lived long enough to know that it doesn't matter how safe you are, how old you are, how prepared you are: no matter what, life and death happen. You can't control them.

To have lost everyone who came before you, to know there's nobody left between you and what comes next ? How frightening it must be to be 92 and to know that whatever time you have left, it's not going to be enough.


It's scary for me to think about that, to try to imagine my world without her, but I've scraped together the remnants of my own naive beliefs, and I wrap them around me like a cocoon of denial... it hurts too much to go there.


I can't imagine what it must be like for her, without the comforts -however false - to protect her heart.

After a while, I went out to the couch where she was laying down and I just sat and held her hand. The tears slid from her eyes, backwards toward the pillow, slowly now, but I could tell she'd been crying harder, by the dampness on her pillow.

She apologized for getting me up (again: as if I care).
"I love to see them come," she said, "but I hate to see them go."

And we were both silent for a while, and I can't be sure what she was thinking, but I know that I was thinking about all the people who've gone and never made it back: Three of her children, my father included, 10 years ago this week. Her husband. Her mother, her grandmother, all of her siblings. Nana. Uncles and aunts, cousins and friends.

People you said goodbye to like it was any other day, only it turned out not to be. People you clung to as you said goodbye, knowing there'd be no tomorrows. People you waved away, absentmindedly, only to regret it forever.
People who just... left.

And I thought about how brave you have to be to let the people you love out of your sight, even for a moment. Why can't we all just sit around holding hands all day, every day? (Yes, I realize that we'd all go crazy within 10 minutes, but still...)

She lost her mother when she was six years old, and she's managed to make it through everyday of the next 86 years, knowing how fragile life is, but not being able to do anything about it besides live. I know it's all we can do, but sometimes it seems like SO MUCH, like TOO MUCH. 86 years and counting of risking, and loving, and wishing and lasting, and trying, and fighting and fearing, and hoping, and just ... being.

And surviving - sometimes curled up in a ball, and other times with arms open wide - but always surviving.

I know...

I'm a bit behind this week, for various reasons

Reason A = Pull Out Couch of Death.

Reason B = Recuperation from 92year old grandmother's birthday party - more slowly than said 92 year old.

Reason C = Tumblr. And all sorts of Tumblr-y goodness, some of which I will share with you in short order.

Reason D = Doctors and pharmacies that can not communicate with each other, and make me do all the (virtual) running around instead.

Reason E = Lil Girl, Aunt Mac, random dragging out of days.

Reason F = I have been more dizzy than usual, and experiencing more jaw pain than usual, and was thinking it was just part of my Flare (see reasons A & B). Yesterday, all of the sudden, I started realizing that the pain and the dizziness seem to be coming from some sort of pressure in my left ear. I'm pretty sure I have an ear infection. But my temp is not up, so new PCP says "don't come in unless the pain gets worse." Of course, now it is Friday night, and the pain is getting worse.

There are more reasons. We shall skip over them. Instead, I shall give Ms Crazed Mom herself a well deserved shout out for perhaps my best comment ever: "an inability to do physical tasks do not preclude brilliance, commenting on TMZ however, does." :) Brilliant, as usual.

I be back, in a bit. I think it's going to be a long night.

I've been writing a post for more than hour

that's supposed to be about how ... well, I guess if I could narrow it down to one thing, then it'd be a lot further along than it is right now.

Mostly, though, it's about how I am pissed off at feeling so bad, about having no answers, about having to find the energy to keep looking for solutions. I'm pissed off at having to explain myself to people who don't even care enough to really listen. I'm pissed off about where I am in my life, and the options I've got, and the not knowing what comes next.

I'm just pissed off.

A lot.

So there: 75 minutes of writing, and what it comes down to is I'm pissed off.


Only the other post had more cursing.


I really need to find a way to finish it, because I so rarely feel like cursing that I don't want it to go to waste.

Stark Numbers

For a few weeks now, I've been seeing a behavioral specialist that my new primary care doctor recommended. At our first appointment, I told her that I was looking for new - to me - ways to manage my pain, up to and including heroin. I may have been joking, but I'm not entirely sure I will be able to say the same three weeks from now if this pain continues unchecked as it has been. (Yes: the Lyrica helps. It helps so marginally, though, that I'd stop taking it if that margin wasn't the difference between "needs to be committed because she can't stop screaming from pain" and "is able to limit screams just to when people touch her".) So she recommended a behavioral specialist that helps people with chronic illnesses find new ways of coping with the pain. I probably still would have preferred the drugs, but I went anyways. I went because my pain and I? We're so tangled up together that there's really no separating it from me anymore, and I just don't want to live like that: it isn't how I need my life to be. So, if it isn't going to get better/go away, then I need to deal with it better, because I feel sometimes that it is swallowing me whole.

The specialist is actually part of a group, and since I couldn't see her, I'm seeing an intern, who I really like. She's very nice, and has managed to - in the two sessions we've had - grasp what I am trying to say even when I feel like I am babbling like a fool. We talked a lot about how I am managing (or not managing) the challenges of living with chronic pain and illness, and she's going to see what she can do for me as far as additional strategies go. At the end of our last session, two weeks ago, she gave me a homework assignment, which was to track my pain. She gave me a week's worth of worksheets (she was sick last week, which is why I didn't have an appt.), and told me to try to circle a number for pain every hour I was awake.

This is not a new experience for me: in 14 years of dealing with this, if I hadn't have somehow tried to keep track of good days and bad days by now, then I don't know that you could call me very smart at all. But it's been a few years since I've done it, in that way that things come up - babies get born and start wiping poop on your face, houses get sold and you have to pack all your belongings up in under 2 months, grandmothers get sick and die in the same short time period - and you get too busy to do more record keeping type stuff. So, I had no problem doing it again.

I think, a lot of the time, that the people in my life are confused about my pain: they think I'm either exaggerating or that it can't possibly be as bad as it sounds. The thing is? I know that I actually understate the whole thing, so as not to spend each day focused solely on myself, so that I don't seem like a constant complainer who nobody ever wants to be around. I try to only grimace when Lil Girl hugs me or my uncle pats me on the back, rather than bursting into tears, which is how bad it truly hurts. I try not to moan every time I move, like my dad does when his back is killing him, because I hate that! I try to keep the whining to a minimum; try to do for myself when I can so that when I can't someone is willing to help; try to make my life as ordinary as it can be.

But the truth is?

During all of that, I am in pain. A lot of pain.

Always. It doesn't go away, not ever.

When I go to the doctor and say "I can't remember a pain free day. I don't remember what that feels like anymore." Or "my pain is 7 out of 10 - on a GOOD day," I am not exaggerating: that is as honest as I can be.


But I can't explain how I do manage to get up and get dressed (some days) and watch Lil Girl or try to go shopping or scrapbook or make cookies or any of the relatively small things I do that make up my every day. I can't explain it satisfactorily to myself, let alone to other people. "If your pain is that high, if you're really not sleeping more than 2-3 hours a night,you wouldn't even be able to function" a family member said to me recently. And the truth is? That sounds right to me, but I know it's wrong: I make it through my days, doing what I can do, living with what I can't do, because that's what I have to do. I don't have a choice - it's just the way it is. This is the functioning I am able to do, so it's what I do.

The pain is not going to go away if I wait long enough; the fatigue isn't going to get better no matter how long I rest (3 years of sleeping 18 hours a day certainly cleared up that mystery for me), and time is going to pass, life is going to move on whether I do anything or not, so I do what I have to do.

And now I'm wandering away from my point (there's a point) more than a little.

My point was that seeing my pain quantified in those little charts (which, because I am sad, I have since converted into an Excel worksheet. Complete with graphs. Seriously: professional student much?) was a surprise to me.

Not that I didn't know the actuality of living my life, but seeing these numbers? Has really brought up a lot of conflicting emotions for me.

It's made me angry, because I see how much of my life is really consumed by pain. There's no real emerging pattern, which drives me crazy. It's so frustrating to see it all in black and white (and colors: wait till you see the colors) because I just want to erase all the high numbers and start over. It's also made me really conscious of the levels of pain - having to seriously consider where I was at, every hour, made it more possible to see all the different yet subtle ways I was feeling better or worse.

I want to print it out and stick it on the refrigerator, or e-mail it to everyone I know or ever met and be like: "See?!? This is what it's like to be me: This is what I'm dealing with. Look at all those 5s and 4s!!! Now ask me again why I'm not working but instead 'sucking up your social security'!" At the same time, I want to hide it... I'm a little bit ashamed of it, that it's gotten this bad. I want to ignore it, to not have to face it.

It makes me want to cry - with grief, because this is my reality and there is no ignoring it and with relief, because I'm not going crazy, it really is as bad as it seems.

And it makes me hope, really hope, that when I go in for my appointment tomorrow, she'll have some magic up her sleeve. It's the season for miracles, right?