Every single time

I swear to god ... I don't know why I bother with doctor's appointments, really.  Every time I leave with a plan, or a set of actions that I think are coming next, and then the test results come in and... nope! Let's do something completely different.

Talked to Zack today... apparently my Holter monitor did not go well.  I  thought I did super well - I did r e l a x i n g things that day so as not to screw with the bp too much - I rocked the new baby for hours! I... had tea and cookies and chats.  I also apparently had multiple "concerning episodes".  That "did not match up with your reported activities."  Well... duh. 

But... what's 'concerning', exactly, Zach?  "Oh, well you threw a lot of PVCs - 275 in less than a couple of hours"  Now, you may not know it, but PVCs in and of themselves aren't that huge of a deal, always - most everybody has some irregular heartbeat type things every now and then! (I did not know that ~ did you?) But.."that's kind of a lot of them, especially if you weren't ... exercising or something."  Insert loooong hilarious laugh at the idea that I could be exercising, and then, take a moment to think about what could happen if I tried to exercise, which is what I have been telling people for years: My heart feels like it will literally explode, because that is how it feels when I try to stand up, or sit down, or move at all. Except - Hey, look at this; these number say that if rocking a baby and drinking (decaffeinated, btw) tea is causing your heart to race and you to have palpitations, probably exercising would not be wise right now.

Color me shocked.

So I have to go get that looked at 'more in depth', which he did not explain  - Zach is very good at saying things like that and then leaving it to his nurse to call me three days later with an appointment booked and I'll be like "but... what's this for?" and she'll say "Didn't he tell you he wanted you to see the XYZologist?" "No, no he did not."

PLUS, in other awesome (read: unawesome) news, my Rheumatoid "pattern" has "completely reversed itself." Literally, from one blood test to the next - something about which proteins are elevated, the big ones or the little ones, blah blah something I don't know... But what he says next is "So you know how Dr. House is always saying it's not Lupus?"

 "And you've always told me it's not Lupus?"

 "Right; It might be Lupus."

"Or..."

 "Probably, more like lupus AND you know, whatever else is already wrong with you"

 "Zack I do not like these answers."

 "Well, it could also be Rheumatoid Arthritis, because that titer or panel" (honestly, at this point all my notes are just arrows and question marks) "is high as well." 

"Zack, how does that sound better?"

  "No, it doesn't, but... you should definitely see an infectious Rheumatologist."

"Why are there even such things as infectious rheumatologists?"

  "Because of people like you."

(And I swear I can hear him smiling, which, even though I love him, makes me kind of want to kill him.)

"So... which of these should I be the most worried about right now?" I ask him, before he can scurry off to another patient or phone call or the fifty million things he can seem to do at one time.

"Let's just say that if the rheumys can't see you in the next 2 weeks, call me back and I'll try to convince them otherwise."

He talks a little bit more about drugs and anemia (I need to take iron, and that might be contributing to the POTS, which could be adding to the stupid PVCs thing) and then gave me doctors to call and blah blah blah.  BUT we never even talked about my thyroid which was the reason I went to the goddamn appointment in the first place.

So now I'm going to have to call him back and ask him about that, too.  Only I don't even want to know, at this point.  Just sent me the test results with a big SNAFU stamp across the top (Situation Normal, All Fucked Up) - I'll be happy with that.


I do not understand bodies. Or doctors. Or life.

“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.

---
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

Fail

My latest drug trial was a big huge fail after one day on it, I had a killer migraine.  The second day, the migraine was better, but I still had a headache and now I had that pins and needles feeling in my arms and legs as if I'd fallen asleep on all four of my limbs at the same time.  But I didn't call Zach until the third day, as pre-arranged, because, if you've started enough drugs, you know sometimes, there's a hump you have to get over.  With the Lyrica, it was like living in Wonderland for the first few weeks.  Some of the other drugs have made me nauseous, others made me super tired (on top of my already exhausted state), one made my sense of taste disappear for a week, a couple of others have done really strange things: I'm almost never surprised.

Except, when I called Zack, he was surprised that I'd kept taking it.  "Why didn't you call me sooner - you don't have to put up with that?"  Um... obviously I do, what world is he living in?  "But it's good that you did, because that tells us something relevant"  To Zack, everything is relevant, even if he can't figure out how yet.  "Mmhmm."

So he called me back after consulting with a neurologist and this is what they come up with: the migraine and pins and needles (some sort of thesia) as a result of that specific drug show that my migraines in and of themselves could be playing a larger role in my whole pain syndrome issue than we've been assuming.  So, new treatment plan: botox for the migraines.  So he says to me, over the phone at like 5:30 on Friday afternoon.

Um, what?  You want me to get Botox for my migraines, which suck, granted, but ... we've figured have been pretty much under control, right?  Wrong.  "Maybe the tension in your neck and your jaw and your nausea are more migraine centered than we've been thinking, and this would help with that." Hmm... that's actually kind of sensible.

"At the very least, it will help with the migraines, give you fewer of those, and that'll be helpful."

Now, I'm starting to get behind this plan.

I have to do a little bit more research first - since a)needles in my b)face sounds c)horrible to me - but I could get behind this, even though I'm pretty sure it'd do nothing for most of my pain.  The fact is my headaches have been pretty deadly lately, so I'll take all the help I can get with them.  But this is just another example of how what you think you're dealing with when it comes to chronic illness is NO WHERE NEAR where you wind up.   

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. 

A little health catch-up

Got knocked out of commission by a wicked cold sometime around the middle of last week, and I've been struggling to reconnect with my brain since then.  (Fevers are not my friend.)  It seems like all bad news around here, which makes me not want to write anything because it's so depressing and all of you all have been so great and wonderful and supportive, but who wants to listen to a person complain forever?  Nobody.  Especially if it's not entertaining complaining.  Trust me: there was nothing entertaining about my cold, the sinus infection that followed it, or the fact that every drug I took seemed to make things worse - What the hell, steroids?  Why do you make my fibro flare?


Only thing I can say is that when College Roommate/Best Friend asked me if I would be Baby Olivia's godmother, I said I'd be there in the church 'unless I was in the hospital.'  Which is stupid, because OBVIOUSLY my body takes that as a challenge and is like "Oh really?  Let's see what we can do about that!"  I've got till Sunday to shake everything from the rapid heartbeat to the contagious germs (and, honestly, as long as I've lost the contagious germs, I'm going), so fingers crossed.  Could use a dose of teeny baby magic :)

-----


On what all the doctors I've seen in the past month (and as I've been cramming them in to make up for all the appointments I cancelled over the summer, that's been quite a few) consider to be the plus side, I've lost about thirty pounds since February.  I guess I should feel more positive about this, except I know that at least half of that is probably attributable to stress, as opposed to the better eating habits (almost no take-out, heart healthy-food, for the most part) I acquired at Grandmother's.  I can't help but feel that worrying yourself to the point of exhaustion, skipping meals (and therefore my meds), or eating three bowls of cereal a day actually aren't the  principles of a balanced diet, but the doctors are so happy I've lost weight that they don't want to hear about those sort of pesky details. 

Still, it has had some positive side-effects: My liver numbers went from somewhere in the 100s to less than fifty; my sugar numbers and Hemoglobin A1C are both at non-diabetes (even non-pre-diabetes) levels again; and I had to buy new bras because the old ones didn't fit.  (I have to buy other stuff too, but I'm poor and the bras are expensive and have to come first.)

  I'm finding the 'no take out' rule harder to handle here at home, where take out is the almost daily norm, plus I'm sick as a dog and can barely manage to eat what somebody puts in front of me most days, but I'm also cutting myself some slack on that because I am freaking exhausted right now and can only deal with so much.  I had a nutritionist appointment last week, and all she kept saying was "keep it up, keep it off."  And I wanted to say, maybe you should be more concerned with my actual health rather than just my weight? but it didn't seem like the right audience for that. Nutrition barely came up at all.  

----------


I also had an appointment with Zach a week ago, and he kind of shocked me by asking if I thought I needed an anti-depressant.  An anti-depressant is for depression, I thought: I'm not depressed, I'm sad.  I'm mired in (what I consider to be) the reasonable quagmire of grief that comes after losing someone you loved so immensely; I'm overwhelmed with confusion about what comes next after putting my own life (such as it was) on hold to care for someone else for almost 6 months and then watching her die; not to mention being almost swallowed up by toxic family drama and sludge.  "It's only been a month," I said: "It's too soon for me to start thinking about whether or not this could turn into depression."  He looked at me for a minute and then said "It's never too soon, because you have a history ~ I didn't think you needed one either, but I wanted to make sure you were being vigilant about monitoring your feelings - I needed to make sure that you were on alert."

As if I'm never not on alert.

-----

Promise to be back soon with something not-depressing, even if I have to make it up.  

Having a bedtime

I know we've talked about my CFS-related insomnia before, but it's tearing off little pieces of my life right now, so I'm going to talk about it again.  Feel free to move along: probably the only thing worse than listening to someone tell you random half-stories about their dreams is listening to someone ranting about how they're not sleeping.  Which is exactly what I'm going to do right now.

For the past few months, I'd thought my insomnia might be improving.  It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up.  I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping).  All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!

And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary.  Sleep is kind of scary.  Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do.  Sleep was as involuntary then as not sleeping is now and it consumed my whole life.  I had to schedule my classes  around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity.  I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours.  My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap.  1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms.  Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.

That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place.  So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte.  So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.

Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them.  Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there.  Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe.  (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl.  I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)

I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't."  Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night.  I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English.  (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene.  Maybe.)  

But I'm re-initiating the bedtime tonight, because it feels like the thing to do.  Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.

Although, I can't promise I won't be back here all the earlier in the morning, complaining again.  

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. 

Patients For A Moment

Kathy, over at FibroDaze will be hosting the next Patients For A Moment blog carnival next week, and her topic -

"When you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?"

is, unfortunately right up my alley.

I'm currently trying to get a handle on at least two startling new diagnoses - That I am either diabetic or pre-diabetic (depending on when I take the stupid blood test), and that my gall bladder seems to want to attack me for no good reason at all.  (Which, unfortunately, makes it not all that unusual from any other organ or part of my body - "Reasons? We don't need no stinkin' reasons!")  I'm also undergoing some testing for an undiagnosed liver issue, which will bring my sum total of chronic conditions up to Way Too Damn Many + Infinity. 

All three of these new issues, plus an injury from a recent fall, have definitely thrown me - More than once I've thought to myself, "But I barely have a handle on everything I already knew was wrong, I don't know how to add these into the mix!"  And I won't sugarcoat it ~ So far, my main coping mechanism has been flat out denial:  I will deal with it by not dealing with it.  That is what I would like to do with each and every illness I happen to have ... I'd like to ignore it until it goes away.  Until it decides that I am no longer worth its time, energy, or effort, and just ... leaves.  But I also know that there is no way in hell this is going to happen.  I mean, it's not like I don't recognize that this isn't a great coping skill; it's just my fallback position. 

Still, denial can only last for so long (I hope), and eventually my brain turns back on, and I realize I have to do something.  I'd say I'm currently smack dab in the middle of this second phase of coming to terms with the newest issues that have been heaped onto my plate: Full out educational immersion.

Deep down, I'm a geek, a scholar, a nerd.  I live my life with the firm belief that there's just about nothing that can't be made better by reading about it - even when I'm upset, I'm curled up with a book, trying to connect to something that will make me feel better.  (The way I knew, all those years ago, that my depression wasn't just run of the mill sad/a tiny bit of malaise?  Was that I stopped being able to enjoy words - reading them, writing them, interacting with them... it was all suddenly bland and useless, and that's when I knew something was dreadfully wrong.)   So, faced with new challenges that I have no idea how I'm going to meet, I head to books, I head to the computer, I head to the library, and I start stuffing as many facts and theories and strategies into my brain as is humanly possible, in the hopes that something will make this easier. 

So far, I've done a done of reading up on diabetic food choices (not diets, because I am not good with diets, but choosing foods that will work better with my body's new issues), which is good, because the nutritionist they sent me to explained things like "you have to eat some vegetables every day" and "the way to figure out how many calories are in what you are eating is to read it right here on the box, let me show it to you", and was utterly useless in every single way.  I've researched what my blood glucose numbers might mean - again, thanks for all your not help, Nutrition Lady - and why the Hemoglobin A1c test that I took could have such varied results, and how I'm probably not diabetic, but I should try to address things before I become diabetic.

  I've looked up the gall-bladder (anatomy - who remembers where all those stupid organs are hiding?), and tried to make sense of the internet's explanations of how something that lives under your ribcage, down by your belly button (ish) can cause pain up behind your shoulder blade, because that is some real ridiculousness right there, human body, and it must be explained.   I've tried to figure out how to peacefully combine the gall-bladder attack prevention diet and the pre-diabetic food choices into a livable mealtime strategy.  (Have not succeeded, by the way, but am working on it.)  I've gone back to some of my favorite chronic illness blogs and looked for relatable, motivational & understanding words; Have reread a couple of books I find inspiring, in the hopes of prodding myself into taking next steps. 

I'm accumulating wisdom by the bucketloads, so that the next time I go to the doctor, I won't be so blindsided by what they're saying, and will hopefully be able to ask relevant questions and actually make progress on things.

It's not the final thing I have to do to make things run more smoothly again - at some point all of that theory and supposition will have to turn into action, and I am sort of dreading that step already - but it's still vital.  It's the 'getting my feet back under me' portion of adapting to change.  The process I have to go through to go from "Hell's no: this is not happening again!" to "Ok: it's happening, let's deal... I know I can pull this off!"   

Yes, I'm disappointed to find myself, 17 years later, under continued attack from so many various parts of my body.  Yes, I'm frustrated as hell that, instead of improving, things just seem to keep getting worse and worse, and that I still haven't gotten to the root of these illnesses, or figured out a way to get rid of them, or how to achieve all the things I want to achieve in my life.  It's beyond frustrating, so much so that when I went to the thesaurus just now to look up a stronger word, one that fit better, I couldn't find one.  It's all of them - upsetting, disheartening, prohibitive, discouraging, defeating, baffling, hindering, depleting - every synonym, all combined together and multiplied a few thousand times.  All of those words to the nth degree. 

But, when I find myself here, at a place that is both familiar and shockingly not, faced with new diagnoses all over again, at least this time I've got some idea of how to get further along down the line:  Stuff brain with as much as it can handle, take breaks in denial land as needed, and know that you can handle it, whatever comes.

And then I fell over... backwards

If only that title was a movie reference or something. Nope: I literally fell over backwards. About two weeks ago, we took the kids to a local low-key amusement park, I got out of the car and into my chair, put my front two wheels up on the curb, thinking that Mum was right behind me, lifting up the back two wheels - like we do a million times, all the time - but she had turned back to the car instead, and I somehow lost my balance, tipped back, slid up out of the chair a bit & my head and upper back met the concrete in an intense and immediate way. Besides being shocking - What the what??? - and completely embarrassing (although some very nice older gentlemen came rushing to help and made lots of jokes about revoking my license and ha ha, not uncomfortable at all!!!), it was.. majorly painful. "Majorly painful" is, in fact, the most definitive of understatements, but since I can't think of an all encompassing word for how bad I have felt since then, it will have to do.

After a few hours of trying to be in total denial ("I'm fine; let's go play skee ball!!) and downing both migraine & pain meds, I realized that I was in fact doing the opposite of fine, and I got myself all checked out at the ER. Where a snippy nurse tried to insist on getting my weight (No: I do not stand up well on good days, today is a very bad day, screw off, sir and take your "but you look fat to me, so I have to know the number" attitude with you); I got to spend a few hours looking at screwed up wall murals and trying to figure out if if it was me or them that was off (It was them); and a very nice doctor ran me through the CAT scan, pronounced me mildly concussed and apologized for the fact that fibro + fall = major suck, and sent me home.

Where fibro + fall has, in fact, equaled complete and total suckage. Although I was kind of shockingly unbruised, the part of my back that hit the ground has been untouchable. As in, I've been wearing button down shirts backwards and unbuttoned for two weeks, keeping my door closed so I can be a lay around Lady Godiva, because holy hell clothing is not allowed to touch that part of me. I've attempted attacking with every painkiller in my arsenal, but it's not doing much. That's not true: it's helping more now, but those first few days, it was like I was taking baby aspirin, or sugar pills, or swallowing pieces of paper, for all the good it did. I never even felt them. My back/neck have always been my most sensitive spots, but there have only been two or three times the pain has been this bad - mostly when I've been sick or flaring in other ways - and never due to something that I had done to myself. It's not exaggerating in anyway to say that I am not sure how I got through those days. Those first three days, there wasn't a person here - it was all just a big pulsing block of pain - I don't even know.

And then, when the pain had dialed back a bit just enough that I could put my eyes on a piece of paper and focus on them, I took myself as far away as I could go, and wandered through all 40 or so (the ones I have here) of J. D. Robb's In Death series. Started back at the beginning of 2058 with Lt. Eve Dallas and all her cohort, and tried to live with them through the next three years or so of her life, so I wouldn't have to be in mine. I know I talk about reading a lot, and how important it is, and it gets to be all blah blah blah books, but if I didn't have a place to escape to, if my mind didn't have a chance to just shut down and follow Dallas and Peabody and all the rest through their cases and humor and horrors and becoming a family, if I couldn't escape the pain by going there, or to Hogwarts, or to Avonlea, or Concord during the Civil War - I don't think I'd still be around to live through things. And that's just plain truth.
(Also honest truth? If you haven't read the In Deaths, you are majorly missing out ~ can not recommend them enough!)

I'm doing better now, tiny bits at a time - still avoiding shirts at all instances (which is not me-like at all, I must confess, and feels incredibly odd) and popping whatever pills are left in my stock, but bit by bit, getting better. It's still complicated since I can't lay on my back, and I can't normally sit up for too long anyways, and either side has time limits on how long I can lean on them, so it's complicated, but it's improving. Talked to a couple of people on the phone, so they would know I wasn't dead. Checking back in here, and in other online spaces, to see what I've missed. Reading voraciously through my poor neglected Google Reader. Actually turned the TV on this morning - before the noise and mess and lights and all that were too much, too confusing - to find a 98% filled DVR: unacceptable with new seasons starting, missy. So I'm battling back, and I just wanted to say hey!

And to remind everybody about the Disability Blog Carnival, hosted here, by moi, in just a few weeks. Keep me busy people ~ Help me catch up on some posts that I've missed!

Sincerely, NTE

Dear Internets,

Thank you so very much for all of your wonderful, fabulous, fantastic links on today, Harry Potter Day! I am quite enjoying them. So much so that I am going to share some of them here, in case anybody else has missed out.

Zoot, who wrote the original template I used for this blog, so I've been reading her for at least six years, and her older son are adorable here. Cheers for tolerant teenagers.

Jennie culls through the Collective's archives for some of the most amazing Harry Potter-related posts ever.

s. e. smith (posting at Tiger Beatdown) talks about accessibility - or lack thereof - and why it is a bitch for people who like things or want to be happy for a little while that nobody (with the power to change things) cares about it very much.

Gretchen Alice compiled the Harry Potter project, full of other people's stories about their HP experiences. (Which I meant to contribute to, but just didn't get around to)

and Tumblr, dear Tumblr is chock full of magic today as it is every day.

-----

Dear Chunkys,

You are not to be thanked for having only one 2-D version available (and pre-sold) for your midnight showings of Harry Potter and the Deathly Hallows Pt2. Some of us require 2-D versions, and also really appreciate being able to sit in comfortable chairs for close to three hours. Yours is the only local theater that is truly accessible to me, on most days, and you went and ruined it by insisting on 3-D (which is completely inaccessible, unfortunately).(Please see Tiger Beatdown link, above.) Since I have to choose between a Fibro-flare and unmanageable migraine & dizziness, I'm going to go with the flare, and take my business elsewhere for the show. But bad call, Chunkys; bad call.


(PS - I will be attempting to take my nephew to the same movie sometime next month - see if you can figure this out better for next time, won't you?)

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

Dear Other Movie Theaters,

I do not really like you, because your chairs are very uncomfortable, and I do not have the option of ignoring that. You are also often inaccessible in other ways, and to many people other than myself. I recommend that you read the Tiger Beatdown link above, as well, and try to remedy that ASAP. As for tonight, I would appreciate it if you did your best to not be so stinking uncomfortable that I am unable to focus on the movie... there is much crying and squeeing to be done, and - while I realize your place of business generally forgets that people like me exist - I want to do my share. Also, on a more positive note, thank you for adding 2-D showings to your midnight offerings - it is much appreciated.

-----------

Dear Fibro-flare,

I know that you are making yourself at home, post-SisterCh's shower and family bad news, but I'd rather you didn't. As a matter of fact, should you choose to abandon me, I would be most grateful. In the meantime: do not mess up my very last chance to attend a midnight showing of Harry Potter... I would be most displeased. You wouldn't like me when I'm angry.

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

Dear Readers,

Hello! Have you read all the fabulous Harry Potter posts the internets are sharing with us today? In case you were wondering, I am wicked excited about attending the midnight showing tonight, and super psyched about the whole thing. We've talked before about my Harry Potter love, but I'm going to try not to rehash all of that right now (in order to refrain from writing about how 'magical' the whole thing is). Suffice it to say that the fact that it is coming to an end - the original series and all that goes with it - is bittersweet, for sure.

My family has had a bittersweet week itself - SisterCh's shower was beyond amazeballs - a lot of hard work (SisterJ rocked it out of the park, SisterK really showed up at the last minute and helped us pull it out), a few cranky "I don't play shower games"-ers (neither do I - but if there are games, the least you could do is pretend it isn't going to infect you with something), and a mess I've barely begun to clean, but still - she was quite happy, and people were definitely impressed - I'm going to have to steal some of the pictures SisterJ took, because I'm sure the only ones I got were of present-opening, but trust me, it went really well, even if said Fibro-flare tried to make me miserable (Fail!). The bitter came, unfortunately, later that same day, when we found out that my uncle - who was quiet and funny and far away - lost his battle with brain cancer. He is the fourth of my grandmother's nine children to die in the past twelve years, and the only one whose death we were (mostly) prepared for, but it's still been tough. To sit with my grandmother, and hear her talk about being superfluous and wondering why "He" would keep doing this to her. To hear from all the cousins and aunts and uncles who are grieving and remembering fathers, mothers, brothers, gone. To live through it all, again & to know that there'll be more grieving coming, and just want to run away and hide, and not have to face any of it. It's not an immediate loss, for most of us - because he was the recluse of the bunch, for sure - but it's still a loss, and I'm sick of losing.

Ahem. So - The movie better be amazing (and I have heard that it is), because it feels like I've been waiting for-ever for it, and for the chance to go to the midnight show (sans costume, unfortunately: things came up - although I'd make a pretty good Bellatrix, if I just didn't brush my hair), but mostly because I just need it right now. I just need the magic (crap: puns, there is no avoiding them when it comes to this subject: sorry!) and connectedness and community and love. I need the fandom and the characters, and the knowing that there are a million other people sitting out there in the dark somewhere, tonight, crying their way through the Forbidden Forest with me.

Total bonus is that I get to go with SisterK, seeing as how she's moving away in a couple weeks and is all "being a grown up" now and stuff. She was younger than my Oldest Nephew is now when we (BigBrother & I ) took her to the first one. She was eleven - just like Harry - when she started reading the books. And I'm pretty sure she's the only one in my family (besides me) who is still disappointed that no owl ever showed up for her. She got her drivers license (way late) especially for this - well, this and the fact that she has to drive halfway across the country in a few weeks, but let's just say it was for this. And I'm going to buy really expensive popcorn and not care at all.

I've been seeing a lot of "Thank you, Harry!" or "Thank you, Jo!" type posts around, and I'm in love with them all. Because those are my people - people who get that books and movies are more than words and pictures, and that characters can be true friends and stories can be more powerful than you can imagine. People who understand that the gift of forgetting about your own life for a little while - no matter how good or bad it may be - is a treasure. And who don't take it for granted.

Technically, I was 'too old'* for Harry Potter - it wasn't my childhood, or even my teenage-hood. I started reading them as they came out, but it wasn't until college. They've been important to me, just the same. Sharing it with my sisters, even though they were only kind of into it; sharing it with my nephew, even though he reads s o o o s l o w l y; battling my brother to get back my copy of the last book; laying on a bed with SisterK, trying to read more slowly so the day wouldn't end: these aren't things that I take lightly or will ever forget. It's good for me, today, this week, to have those things to remember & it's hard for me to believe that they all came about because one lady decided to start writing things down in a coffee shop somewhere.

To someone who loves words as much as I do, that is pretty much a miracle. That the writing down of words; the creation of a universe so different from our own, and yet fundamentally the same; the invention of spaces and spells and specialness; the journey of a boy and his friends, could come to mean so much, to so many.

It won't be the end of the world, when there's no more new Harry Potter movies, just as the world didn't end when George Lucas decided there'd been enough Star Wars movies (of course, some people rejoiced, but that's a little bit off topic), but that doesn't matter - it doesn't make it less sad that there's nothing new coming down the line. It's ok that it's sad - that's life. But the best part is, fifteen years ago, I'd never heard of Harry Potter, and neither had anybody else, really. So there's always the possibility that tomorrow, some other journey will start, and we'll all fall in love with somebody else. That's life too: exciting and surprising.

So I'll go tonight to the midnight show (my first! midnight showing!) and I'll try my best to have an amazing time & knowing that it's not the end of the world, and that it will be incredibly bittersweet. And I'll love every minute of it, and be thankful that I'm here to enjoy it.

Miss you! Be back soon!

"I don't want the world to see me, cuz I don't think that they'd understand when everything's made to be broken, I just want you to know who I am"*

Day 13 : A Band or Artist that has gotten you through some tough-ass days

Dear City of Angels Soundtrack (Specifically songs 1, 2, 6,7,8, 13 & 14):

I've always been one for music, but can't remember any special allegiance to a particular band or artist. There's been a lot of tough times in my life, and music has helped me through them, sure enough. But never any one group, never any one artist that stood above the rest.

However.

Do you remember that period during my sophomore year of college, and the summer immediately following it, when my educational advisor advised that I think about a "career other than education"? When the resident advisor advised me that I would "have to live in a building without an elevator: everybody has to!" and that I wouldn't be able to get an earlier number in the housing lottery "just because I wasn't feeling well" ?

When two out of four of my sisters weren't speaking to me because I was ruining their lives by demanding that they not spray perfumes in the house, or because they had to be quiet over the weekends, while I was home resting? When my Grandfather died, and my alcoholic father was a jackass to me at his funeral?

When I really was so sick that I thought, for sure, I wouldn't be able to go back to school come the fall? And I was literally bedbound to the point that watching Jeopardy with my mother and Nana became the highlight of my day because it was the only time I could be involved in something that didn't require me to move at all but was still entertaining?

Yeah: that was a pretty tough time for me. And the tv was too loud and too bright and it hurt my eyes and my head, so I couldn't really turn there. And the radio would get boring after a few hours, or I'd get too fed up with the commercials. And there you were, sitting in a stack of my sister's CDs.

I managed to catch her on a good enough day that she said I could borrow you, and I think I kept you for about 5 years after that. But it was that first year that really mattered. That first year were I felt like "This is music that understands that not all the world is awesome and happy. Thank god." Because I really, really, needed something that wasn't sugarcoating it, and something that wasn't going to ignore the very real pain I was in.

Looking back, it seems kind of absurd that all those songs about angels and spirits and a cheesy Nicholas Cage/Meg Ryan movie could possibly have meant anything, but they did. They were just the right amount of melancholy for a girl who felt like the whole world was moving on without her, who was mourning the woman she was supposed to have been.

"the news that truly shocks is the empty empty page
while the final rattle rocks its empty empty cage
and i can't handle this"

Truth.

"For a break that would make it okay
There’s always one reason
To feel not good enough
And it’s hard at the end of the day
I need some distraction"

More truth.

"God has got his phone off the hook
Babe, would he even pick up if he could?"

Truest yet.

So thanks, purloined soundtrack from a movie that I only watched once and couldn't bear to sit through again (sad. Sad movie.): I appreciate the angst of your songs just enough to listen to you on repeat, endlessly, for the better part of a year. Life was kicking my ass, and (while it has not yet decided to stop) it was nice to have a partner in my malaise, somebody who understood that world was HARD, and SAD and it was ok to feel it. Thanks for letting me stew in my funk for as long as I needed to, because eventually I came out the other side (mostly).

*Iris, Goo Goo Dolls
-------------------------------------------------------------------------------------

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

"If I had my way I'd make health catching instead of disease."*

First off, I want to thank all of you for your very kind thoughts about my grandmother. She is much improved, and has moved from the hospital to a local (ish) rehab, where she's getting some much needed help with her leg strength and balance. Aside from being a bit more wobbly (which was an issue prior to her fall), there seem to be very few ill lasting effects. Knock wood, throw salt, praise the god/goddess/ancient deity/flying spaghetti monster of your choice. I do really appreciate the support I've received here, and can't tell you how much. We're working through it. Slow and steady.

One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -

• Because she has an atrial fibrillation, her heart rate and pulse can drop dramatically, and she's been on multiple blood pressure meds to help control this. For me, that's the POTS, and the drugs she's been on? I've been on the majority of them too.
• She has weakness and swelling in her legs, and they're not really sure why. Ditto here.
• She has freezing cold feet - sometimes requiring three or four pairs of socks. I also have this problem (although it's not as constant as hers, and is complicated by the burning on the bottom of my feet sensation I get too), and most days, if you put your hand on my upper thigh and slowly move it down, you can feel about a 10 degree temperature drop by the time you get to my icy cold toes.
• She has an unexplained (but attributed to her heart condition) dizziness and vertigo; I have an unexplained (but attributed to my POTS) dizziness and vertigo.
  
• Neither one of us can stand, unaided, and straight. We invariably begin to tip after just a few seconds.
• She's passed out more than once - her history of fainting spells stretches back to when she was a teenager. Want to take a guess when mine started?
• She's weak and she's tired a lot, and they like to say things like "Well, you're ninety three, what do you expect?" when she complains about it. I'm tired a lot, and unreasonably weak, and they like to say things like "Well, you've got chronic health conditions, what do you expect?"
• We've both learned to sit at the edge of the bed, feet dangling for a minute, before we dare to get up. (And by 'learned', I mean to say we both remember it when we feel like it, and sometimes screw the consequences when we don't.)
• We both have extremely sensitive skin - her back has been as hot as coals ever since she was admitted to the ER, due to some combination of hospital/rehab soap and laundry detergent. They gave her some medicine to put on it, which I've been helping her with, but the rash I got on my hands spread like fire all the way up one of my arms, so I had to start using gloves to put it on.
  
• Neither one of us likes to be in the position of asking for help, and get frustrated by people telling us what/how we should be doing things. (Oh wait: this is unrelated to our medical conditions unless "stubborn as a jack ass" is now listed as a medical condition.)
  
• Same goes for physical therapy and occupational therapy. (See above point, re: jackassery.)
  
  

Our medical conditions are in some ways eerily similar, even though I know they are not the same: I have had about a million heart tests, and by now, for sure, they would have found the murmur or the blockage or the tiny little atrial valve that plague my grandmother. It's not what's wrong with me - I've got a million things that she never had: extra sensitive sense of smell and hearing, allergies to every natural and man made substance ever, hyper reflexes, muscle wasting/weakness, chronic infections and low immune system support; Most importantly? Pain, pain, pain, pain, pain. I'm so glad that she doesn't suffer from pain that I could cry, but, since it's my most debilitating symptom, I can't pretend that it's not the biggest difference in our situations.

So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?

It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.

The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.

But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.

And that the weaknesses we've got in common don't matter near as much as the strengths we share.

*Robert Ingersoll

Took me a while

but I'm finally posting to let you all know that the surgery went well, and I am recuperating. It is a process, which I hate (I'm much more in the mood for a recovery of the 'flip a switch' variety), but since I'm finally seeing/feeling signs of progress, I suppose it'll do.

I will say that it was a much more painful prospect than I had prepared myself for, the probable cause of which includes me getting an infection, and thrush, and being hideously nauseous to the point of dry heaves, and not realizing that this was not just a normal post-op situation, and trying to 'push through' it like a big dope. But, now it is starting to get better, and today I ate noodles (my first meal other than mashed potatoes, slush, jello or soup broth), so I know it must be improving.

The pain meds are killer, in that I find myself constantly loopy: Today is my first day back on the computer, and I have spent an hour and a half writing the three paragraphs you see here in the hopes that they will be logical and legible. I do not like this sort of high life, and am trying to cut back on the pain meds as much as possible, so that I can function.

Worst of all, probably, is the fatigue. This is not unexpected either, since the CFIDS makes exhaustion my constant companion, but I always forget how much energy recovering from illness/stress/operations takes, and then am shocked when I can barely life my head from the pillow sometimes. We had two weeks without Lil Girl, and I think my incapacity has shocked her too, now, which I hate. I don't like for people to see how weak I can get, and for her to see it (because I see that it worries her) makes me want to cry.

Or punch things. If I had any energy to punch things, but I can't cry because Did you know? That crying? After sinus surgery? Will HURT??? Well it will: Trust me.

So there's the update: Am doing better. Would not make this decision again if I had it to do over (but should probably reserve judgement until I see if it actually helps things). Need a large, large nap. And less woogy drugs. Miss you all, and will try to check in again really soon.


Love, NTE

I did mention, right,

that I hate doctors?

So, you may remember that I was all on board train "face surgery" as much as any person could be anyways, when last we discussed it. Well, today I had some (unrelated) blood tests, and my liver came back SNAFU. My liver is like that - sometimes, it is fine and dandy, other times it grows things named after cartoon characters from the 1980s (Looking back, I realize that I was not actually writing this blog way back when I developed my hemangioma, which is pronounced exactly as it is spelled: He-Man-Ge-Oma, but that's what I am referring to). It has been labeled fatty (which hurt both our feelings), been ruled out as a donor organ, put on (and taken off of) various medications, and sends sudden, terrifyingly high bad cholesterol numbers to scare lab techs into making the doctor call me back on the very same day. Of course, the fact that those cholesterol numbers also drop dramatically every other time doesn't seem to bother them, but for right now, I'm supposed to be impressed that they are "startlingly high" for someone so young. (I'm not impressed, or bothered, and will just wait till next time before I panic, thank you very much.)

But aside from the cholesterol, my liver enzymes are elevated, which means ... what? Something. Maybe. Nothing? They are Not Sure. They want More Tests. They are Reviewing My Records. - Or, they will be doing all of that, they promise, when they return to the office in a Week and a Half. :sigh:

Which means the sinus surgery may have to be postponed, which I am not pleased about because, well, now that I am on board the train, I would like it to leave as soon as possible, so that I can get off of it as soon as possible. I do not like waiting. I do not like new problems to pop-up when I do not have the energy to deal with them. I do not need some new Skeletor to face, and I'd rather not have to deal with a recurrence of his arch-enemy either (Because, although all that that required was monitoring, liver ultrasounds - any ultrasounds - and me of the FM pain/tender body parts, do not get along well).

I'm just having the kind of the week where things seem to be crumbling/sucking no matter what I do... things that start off with the best of intentions are suddenly horrible and poisonous, and I have no idea where they went wrong or how to fix them.

So when the doctor - my primary care, whom I do not have much faith in at all - called and said "This is a problem. But I'm not going to be here to help you figure it out for two weeks", I wanted to dissolve into a puddle. I mean, I know, in my head, that there are things I can do - like calling the surgeon or Zack in that time, just so I know what their take on the whole thing is - but right now, all I want is for all the complications to Go Away.

Or, maybe I could go away: Where is Swift Wind when you need herhim?
(Did you know he was a he? I didn't.)

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

Number 1: It ends the debate. CFS is not, and never was, a psychological disorder. Those who are ill have always known this. The physicians who take care of them have always known this. And now, finally, those who have attempted to keep patients from receiving medical care for this disease know this. Number 2: This finding demands serious attention. Attention in the form of research funding. Just as our government has responded to the threat of HIV and other serious, emergent infectious agents, this finding demands significant and responsible action from our national health agencies. ... Patients deserve to know if they are infected, and to be offered effective treatments that will stop the progression of their disease. "

Annette Whittemore

This past October saw (as is, by now old news around the CFIDS niche of the blogosphere), the publication of a study in Science that linked a recently found retrovirus - XMRV - to Chronic Fatigue Syndrome, Fibromyalgia and various other "neuro-immune diseases." The link was as strong as 90-96% of the CFIDS affected patients vs 4% of control subjects testing positive for XMRV. According to the Whittemore Peterson Institute (principal investigators), "The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections."

Of course, the study sampling was small (only 200 patients), and it did not prove causality vs. comorbidity. Also, although the retrovirus was detected, the researchers are still unable to say what, exactly, the XMRV infection means to those who are infected, so there is still a lot of work left to be done, but what it does mean is that there could soon be blood tests available for XMRV, and that treatment trials - including those of many already known and funded anti-viral medications - could follow soon after.

For the most part, I'm going to try to keep this post from being too personal, since that's what transformed my other drafts from being 'just a tad too long' to being 'too long to post because no one will ever trudge through all of that.' However, I do have to note here that being able to type that sentence, to include the words "treatment trials" and know what they would mean for my life, and for the lives of so many fellow CFIDS sufferers: Well, I just can't explain the kind of hope that gives me.

To say that this is the first, real leap of hope I've had in regards to my medical conditions in at least 6 years is to downplay how important this news could be for me. I've talked before about laying in the MRI tube, with its infernal clanking and banging, shot up with radioactive dyes and praying that this time, they just Find. Something. Anything. Just to know - just to have the answer, know the steps to follow, just to have some clue. It's not an impulse I am proud of - that there have been times I would rather know I was dying than have to live with the not knowing - but the impulse has been there all the same.

"And so you can generate a hypothesis, much like the HIV hypothesis, is that you get an acute infection, you develop an antibody response, ultimately you have a failure of the immune system, and we postulate here that ultimately may be an NK cell numbers and function, resulting in very significant and prolonged disease. That is a model that could be fairly easily tested, and I think that that is something we should do rapidly and judiciously. "

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

There's also no small measure of joy in knowing that I might be able to prove my illness to people - to have my experience validated, not just by those who know or love me, or just by those who suffer the same ways I have, or just by the rare doctor who 'believes' what I am saying - but by every damn body. So that I won't have to be afraid if I require a trip to the emergency room, knowing that I won't be met with distrust and derision, that I won't be sent home in tears, or told to wait for the psychologist to come down and see me: that I would be treated as a person who is sick and needs care should be treated.

There's a lot of talk now about invisible disabilities (at least in the online communities I frequent), and I think that that is awesome, because there needs to be a lot of discussion about one of the most marginalized groups in our society. But something I think that often gets overlooked, is that within the medical profession, there is too often a divide between how they treat what they can see - even if it means that it's only visible in a blood test or a CAT scan - and what they can't - for example, things like chronic pain or mental illnesses. Even though I know that no proof should be required, I also know that in the real world, it still is.


Witness the ableism in this excerpt that justifies my experience even as it nullifies someone else's - From Reno Gazette Journal: "You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy," Mikovits said." At the exact same time that the XMRV findings were being released, I also came across these two pieces of research - The first was that the at a meeting of the "2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms." And the second is a study out of the Netherlands that discusses two commonly used "therapies" for CFIDS/ME - Cognitive Behavior Therapy and Graded Exercise Therapy - and concludes that "it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET." And yet, those are still recommended by the CDC and widely used as "treatments" - almost exclusively in some countries.

These are the attitudes patients have to contend with, in the real world - to be GRATEFUL that you are living with a deadly retrovirus, because otherwise people might not take you seriously; to know that any doctor you might go to could just tell you he doesn't "believe" in what you have; to get recommendations for treatments that are not only unproven, but incredible dangerous and potentially lethal - and to have no alternative treatments available to you.

As far as I am concerned, the least that has happened here is that this development has renewed the interest of scientists into these diseases that have gone too long ignored. Drug companies go where they know they can make money, and with the CDC estimating that CFS alone "affects more than one million people in the United States. There are tens of millions of people with similar fatiguing illnesses who do not fully meet the strict research definition of CFS," there is certainly profit to be made. From Medical News Today, November 09: "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man."

"Retroviruses like XMRV have also been shown to trigger latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS, according to a statement from the NIH. Dr William Schaffner, professor of infectious diseases at Vanderbilt University in Nashville, Tennessee, told the New York Times this was an exciting discovery that made sense and he suspects it will lead to an "avalanche of subsequent studies".

ME Action, Nov 09.

"Judy Mikovits, the lead researcher in the study, said their findings also are being taken seriously by the rest of the scientific community."I've gotten more than 100 e-mails from physicians, and I've gotten calls from the head of the Mayo Clinic and the clinical director at Sloan-Kettering," she said. "Those people wouldn't take the time if they didn't think this was a significant finding."

Reno Gazette Journal, (Nov 09)

“Another notable feature of XMRV is that the frequency of infection in nondiseased controls is remarkably high...If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United States and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown”

Science Express, Oct. 09.


So that's an overview of the XMRV findings, from my perspective: It's something to be cautiously hopeful about. I have a bunch of other quotes and thoughts to share, on a day when I can write more, but for today, I just wanted to leave you with this:

“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough."

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