Thoughts on my ill-aversary

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










(cross posted on my tumblr)

Went to 2 different comic book stores today

Had two completely different experiences. 

The first, Hub Comics*, is right down the street from the old house, and UJ (who I was visiting with this morning).  I'd been messaging with one of the employees there about subscriptions and prepaying so that they'll hold my book longer than a few days if I can't get in right away to pick it up (Chronic Illness and deadlines: we do not coexist well!)  The guy was super nice about it, and when I went in today, even though there were two different guys, everything seemed to work out fine.  Although... now that I'm thinking about it, I didn't prepay for the next issue, which is what I meant to do, and brain fog why do I take you places?!?!? Damn it.  OK, well: I'll have to pick that  issue up right away, and prepay while I'm in there, but anyways: the guys were nice and help set me up with my subscriptions.  They let me browse without imposing or being weird or pushy.  Only issue I had was a) two steps, which is not optimal in the chair (must fix accessibility, Hub Comics people!) and b) dogs came in for biscuits which was really cute but not good for my whole 'let's remain breathing' portion of the afternoon.  Luckily, after obtaining said biscuit, doggy and owner quickly left, or else I might have had to.  But, overall, totally positive experience.

But they didn't have one of the books I was looking for, so I headed to the Meadow Glen Mall (which is not a hoity toity mall, trust me) and Harrison's Comics (which I did not know had another location: note to self).  So here's a thing I did not like: Wednesday is new comics day (as you may or may not know), and they had all the new comics out on the wall, with signs that said "Not for sale till tomorrow."  I am not a huge comic book store person, so I did not realize that "not for sale" also meant "you can't touch these" till tomorrow, and when I went to touch one of them (Did you know Castle has a comic book?  I did not!  And now I have to find out more about it, because, is Nathan Fillion drawn in it?  Because... must make it mine, if so.) and when I went to pick it up, the guy bit my head off!  "Miss! Those are not for sale till tomorrow!"  (He only get's 1/2 a point for barking Miss instead of Ma'am.  I'll give him that, anyways.)

Now, I am socially awkward enough in places where I am not ... super confident.  (Ok, so that is technically everywhere, except for ... say the library: confident. I know the rules there!) And comic book stores tend to be (for me) intimidating anyways, because I'm new to comics and there's so much that I don't know.  And when the guy yelled at me?  I wanted to die.  I mean literally, I am 33 years old: I have no idea how old the guy was (because I never looked at his face because I was bright red the entire rest of the time I was in the store, which was all filler time of me thinking "how fast can I get out of here without it looking like I am running away because this guy snapped at me?"), but I felt about 7, getting caught shoplifting or something equally horrible.  I do not like to be reprimanded.  I am so bad at it.  And all I did was ALMOST touch a comic that wasn't for sale yet. So I just sort of slunk up and down the aisles for another five minutes, all beat red, hoping that the other guy would take the register so that I could check out with him, but no such luck.  I mean, I get that it's the policy of the shop, but if you have 25 signs that all say "Not for sale till tomorrow," maybe, for the sake of the newbies like me, at least one of them should say "which means you can't even look at them even though they are on open shelves just like everything else in here."  For the sake of my blushing cheeks, anyways.

And yes, I know that some of this is just me being totally awkward and why do you even care what he thinks, but still... clearer signs for people who don't know all the rules would still be nice.  And less snapping, even if you probably have to tell people not to touch about 17 million times every Tuesday. (which might be prevented by clearer signs, just FYI.) Definitely a less positive experience, and they didn't have the book I was looking for either (although I did pick up a Women of Marvel poster book which looks super cool.  (Just wondering, comic book people - do you not take those apart to get the posters?  Because I'm totally going to take them apart for the posters, but it also seems kind of sacrilegious because it's a book....)

But look at me, out and about, going to places where I'm totally not comfortable.  Didn't ask about game nights though - which I heard they have around here somewhere, at Hub because I forgot (oh Fibro Fog, seriously?  You are screwing up my whole day - I thought I'd done pretty well!) and at Harrison because Hells No, my face was on fire, are you kidding me?  Oh well: there's always next month**

*Also please note their super adorable signage: Love.  :)
**Hub's website says Tuesday nights from 5-9.  Tonight was Tuesday: why didn't I wait a few hours? Next time, Fibro Fog: no forgetting.

Yes, totally amazing: now give me my meds and shut the hell up.

What did I say I was going to talk about tonight? 

How about strep throat?  Was that it?  No: I didn't think so, and yet, there it is. 

I spent the whole week hoping that my throat was just raw because the music was So. Loud. at the wedding on Sunday (I am the old person you all hate - Why does the music have to be that LOUD???) so to talk to anybody, you were basically yelling.  All night long.  I just figured I'd strained my voice a little.

And that probably was some of it, but then when I went in for my shots on Wednesday and some man in the doctor's office coughed directly on me.  Like, right on my face.  And didn't even give me the courtesy of an "oops," let alone an "I'm sorry, I just gave you the plague, would you like a Kleenex?"

So when my throat was about a million times worse this morning, I gave in and called my primary care, who was, you guessed it! Out of the office for the day, but her on-call covering doc could see me at three, would that be okay?  Sure.  Whatever.  Fine.

They called three times between 10:00 this morning and noon to rearrange the appointment times, and I was ready to be like "Never mind: miraculously healed! Just stop calling and making me TALK - did I mention my throat hurts?!", but then they did stop calling, so I decided to suck it up and go.

Now, the only new symptom has been my throat - nothing else, no coughing or wheezing or sneezing or anything, so I just assumed the covering doc would look at the red rawness, stick one of those sticks down my throat, and write me a prescription for the strep throat antibiotic I obviously need.

Isn't it hilarious how I'm still optimistic (and stupid) after all these years of dealing with doctors?

No it was: Let's talk about why you're in the wheelchair (because it might somehow be relevant?), and What do you mean it hurts when I press on your neck and lymph nodes (they hurt all by themselves, lady: don't touch!) and Are you sure you had bronchitis a few weeks ago? (Well, maybe I had a brontosaurus a few weeks ago, but I'm pretty sure it was bronchitis.)  Literally, let's just retake your whole history, for a strep test.  And then?  Still not give you any antibiotics.

No, after hearing that I'd had bronchitis a couple of weeks ago, and three or four sinus infections this year, the on-call doc decided that I might just have another sinus infection, and gave me Flonase.  Which... doesn't treat sinus infections.  (Or, at the very least, doesn't treat MY sinus infections.)  Told me to gargle with salt water (which I've been doing, and I hate, and blech).  Or it could be allergies, although allergy season is mostly over....and I'm on no less than three allergy meds. Whatever.  Definitely helpful, thanks!

 And then she preceded to talk for fifteen minutes about how interesting POTS is and how she's never seen anybody with that, and isn't it amazing how many ways the body has to adapt to things?

Um... no? 

My body is MALadaptive, lady.  It is adapting poorly, not "amazingly."  And I don't care if you see patients like me every single day, or once every 3000 years, could you just stop chattering on and on and actually treat what I'm here for, so I can go home and be sick in my own damn bed?

It was frustrating, to say the least, and the thing that makes it worse is that if I had called yesterday, instead of waiting to see if it'd go away (like a dope), I could've called Zack's office, and the nurse there would've just sent my antibiotic rx right through... I kind of having a standing order.  But they're out of the office today, so I figured the primary care was my next best shot.

Turns out my next best shot would've been attending medical school myself, so I could write out the damn prescription and stick my own little swab down my throat.  Next time. 

  

Here we are in November again,

that time of year when your Google Reader explodes as all the lax bloggers (like me!) attempt to come up with blog fodder for their daily NaBloPoMo attempts.  I haven't decided yet whether or not I'm going to try for that, I just know that I don't want to miss out on my 6th year because I was so stuck in a funk I couldn't even try.  So, I figure I'll try.  Who knows?

The funk, though, man.  It's like Pigpen level, people.  Between the bronchitis and my complete inability to stand people, I have been a joy to be around, I assure you.  I got a ton of things accomplished this morning, however: rebooked a bunch of appointments I missed out on because of the germs that were trying to take over my body, labelled two hundred pictures, bought a couple more Christmas presents (leaving me with like, four people left, which is awesome, and necessary because we all know I will get sick 17 times between now and then, and that severely cuts into your shopping time). 

Started writing a novel. 

I'm sorry? What was that? 

Yeah: I signed up for NaNoWriMo, because I am, apparently, an idiot. No, in truth it's because there are apparently no limits to my ability to procrastinate doing things I really don't want to do, because instead of looking for housing again this morning (because it is so gorram frustrating and near to impossible), I signed myself up to write 50,000 words in the next thirty days.  I'm kind of a dope.  Not that I can't write 50,000 words in thirty days, it's the "having them all go together logically" part that gets me.  I've written a couple of (really bad, no, honestly terrible) novels already, but this will be my first time pressured one, so it'll be interesting to see how it comes out.  So far I have about 1000 words of description on three of the main characters.  I'm surprised I didn't start writing about their shoe sizes, to be honest... Now I've just got to get them to do something interesting.  

So I hope to write here, I hope to write there; I hope to be there more for the people who need me, and figure out how to better ask for the things I need; I hope to find some miraculous new way of affording (not just financially, but physically) my own place; I hope to figure out how to stop being so angry and sad all the time; I hope to dig my way out of this funk and through to the other side, however I can.  November, you've got a lot riding on you, so let's kick ass.

Good luck to all of my fabulous readers ~ may whatever you hope to do in November work out for all of you.  Fingers crossed.      

Moar! Writing!

On the plus side, I have spent three hours today writing.  On the negative side, I spent most of those three hours writing and rewriting a post that is nowhere near ready to be shown to people, so let's call it a wash.  I was going to write that I'm enjoying writing again, but that's a little bit too strong: I'm almost enjoying writing again.  The almost is only because I forgot the part where it was work, and working at something, particularly if that something is emptying your insides out onto paper (or computer screen, as the case may be) is not always enjoyable. But that's the only part that isn't - Giving myself a set writing schedule and feeling so! accomplished! when I can check it off my to-do list (even if nothing awesome actually has resulted yet).  Shutting things off in order to hear the sound of my own thoughts.  Paying more attention to the difference between what I'm thinking and what I'm saying.  Knowing that the part of my brain that has things to say isn't as useless as it has been pretending to be - all of these are excellent things, and I've missed them.  Now if I could just get it all to make sense to anybody else but me, I might have a shot at sticking with this whole writing thing.

In which I morph from Grumpy to Weepy, all in four short paragraphs!

For a large portion of the day, I felt so grumpy that I didn't think I should be allowed around other humans.  I almost typed "grumpy for no good reason", but then I thought about it, and it was more like "grumpy for a thousand good reasons, but none that I can do anything about right this second", which basically amounts to the exact same thing.  I came here, all prepared to write (yet another) endless rant about lord only knows what, but sometime in the last half hour, while sitting at the table with my family eating a very late dinner, the majority of those bad feelings shrunk down to manageable, and I think I'll save the rant for another day.  For tonight, I think I'll tell you how glad I am that I'm just sitting here, wandering around through the internet, while most of the people I love are accounted for. 

It seems, at least to me, that my life - and the lives of the people I am closest to - has become a series of blundering our way through one emergency to another, from one crisis to the next, ricocheting from one hectic gathering to the last, often leaving very little time for essentials of life, such as breathing or eating.  Every day has taken on an urgency that didn't used to be there, and at the same time, leaves me with such a useless, futile feeling: It's as if I'm running as hard as I can, and getting nowhere, not understanding that there's a treadmill beneath my feet as opposed to a street.

Moving all the time - at least mentally - and making no progress.  Even the areas where I can see progress being made, it feels like so little, too little to ultimately matter.  I am that prototypical lone sailor, trying to bail out my boat with a teaspoon, only some days, it seems more like a thimble.  So it's a rare treat when I can stop running for a little while, put down the teaspoon/thimble, and just be.
And even a half hour of just being.  Of just letting a good book take me far away, or sitting with my family at dinner listening to them bitch, or here, in the dark talking to you fine people, is invaluable.  (Literally had to just google invaluable to make sure it meant what I wanted it to mean.  It does: you guys are priceless, google says I say so.)   Back to the bailing, would appreciate larger spoons. 

On the plus side, we all apparently survived the end of days

In an apparent effort to ensure that a member of our family has to visit the hospital at least once every two weeks, my 94-year-old grandmother fell, face first, down the fifteen (thankfully carpeted) stairs in her home early yesterday morning.  My uncle heard her fall and rushed down the stairs, where she was gushing blood from a nasty gash on her forehead, struggling to sit up, and frantically asking him if she had gotten any blood on the new wallpaper.  (She had not, in case you, like she, care about that at all: I, in case you were wondering, do not.)

I spent most of the day today at the hospital with her, where I was shocked at her battered appearance, although, I don't know why, since she fell down a flight of stairs - she's mostly black and blue, with two huge cuts on her forehead, as well as numerous smaller cuts on her face.  Her main injury is a broken shoulder bone, which was immediately operated on, because it was putting pressure on (or cutting off ? My uncle is not so good at communicating medical stuff) an artery.  She has various pins and screws holding the arm in place, and the artery was repaired by a graft, but she's in pretty tough shape.  Between her head injury and the pain meds, she wasn't completely on target while we were there - the nurses kept asking us if she was usually more lucid, and I said that she never takes more than an aspirin and she banged her head up pretty badly, so I thought she was doing pretty well, even if she did say "Bahama" was the president, and that we were in a library that she was afraid would be closing soon.  (Also: it is December 28th, 2012 - hence this post's title.)

They're talking about weeks of recovery - hospital and rehab - and this is her second go 'round with all of that, so hopefully it will all go as smoothly as it did last time.  I'm just glad she's doing as well as she is... it was pretty terrifying to read my uncle's e-mail ( I mentioned, about the not being good at communication, right?), and then seeing her today was pretty rough as well.  But tomorrow will hopefully be a little bit better, and we'll get this healing show on the road. 

After all, we have to be in fighting form for the apocalypse, right? 

PS - why do hospitals have to smell like that?  It is hideous. 

From the Random Files in my brain

Here's an interesting article about "dystopian fatigue". The author discusses her need for happier slanted movies and TV shows, leaving her looking for a little Glee or a Modern Family to brighten up her viewing habits. I agree with much of what she's saying, and hope that programmers are listening - I am so far behind on the heavier things that are sitting in my DVR, but I watched ABC's Comedy Wednesdays live, every week. (Except for Cougartown, which I refuse to watch because the title makes me want to puke.)

That said, I also just read a fabulous dystopian YA book that I can highly recommend - The Forest of Hands and Teeth by Carrie Ryan. It's gripping and moving, and I read it in an hour and a half, and am going to read it again, with post it flags and pencil at the ready, as soon as I can get my hands on the sequel. I chose it based on some great reviews, so I know it's not exactly an unknown book, but if you haven't read it, then you are missing out on something special. There were parts of this book that were ridiculously difficult to read, which I know some people shy away from, but, for me, it just shows what an exceptional writer the author truly is. Set in a far distant and horrifically frightening future, it could have been one of those books that was just a good read, but doesn't feel likely or truthful. Exactly the opposite is true - this book is REAL, zombies or no - and makes me want to gobble up anything else Carrie Ryan has written.

Bits and pieces, like I said.

Hey there, all!

Connections
Originally uploaded by bbackprple

Peeking out from my blogging break to post this photo for the I Heart Faces theme of Reflections. (It's so great that they have the themes posted ahead of time). I knew exactly which picture I should use for this.

Things here are crazy. Tonight's my last night in the house, and I'm all over the place, emotionally & physically. Happy, sad, confused, excited; sick, exhausted, & sore. (Mostly exhausted and sore.) I'll be staying at my grandmother's for the foreseeable future, while all the repair & painting type work gets done at the new house, so posting will continue to be catch as catch can for a while now.

In the meantime, enjoy this picture of Lil Girl reflected in her dad's picture: it's certainly captured the whole "looking forward, looking backward" vibe I've got going in my life right now.

Hope you all are well, and, if you get a chance, head on over to check out the rest of the I heart Faces pictures!

Yeah, my best shot?

had better still be in my camera, because otherwise? I got nothing.

I'll try to get it out of its metallic cage and onto an electronic one tomorrow. Am still really, really wiped out.

So, as Scarlett might say "Tomorrow is another day."