We’re Ba-ack . . . and We’ve Moved!

Hi everyone.

Barnum and I are still around. I’m still having issues with my hands and wrists, but it’s not as severe as it was, thanks to ice, rest, and a change of medication.  In case you’re curious, I have tenosynivitis, which is basically tendonitis of the wrists, and some tendonitis in my hands, too. I’m doing things like icing three or four times a day, researching wrist braces that I can tolerate (most are made with neoprene, which is super toxic and not an option for me due to my MCS), and trying to mouse and type less. It seems to have been caused by a combination of the Lyme drug I was using, Rifampin, damaging my tendons, along with my constant computer use and my various other inflammatory diseases. My OT said it was “the perfect storm.” Terrific.

I’ve tried various software and hardware solutions:

• I’ve got a more ergonomic keyboard now and am still trying to find a “pointing device” (mouse, touchpad, etc.) that doesn’t injure me more.
• I got speech-recognition software (Dragon Naturally Speaking), which works pretty well for things like emails when my voice is also working well, which is about half the time. The other half of the time, when the dysphonia kicks in, Dragon is completely useless. And using it for editing and blogging is mostly an exercise in frustration.

So Far, Barnum hasn’t been much help with this new disability. The main things I’ve had to change our how a transfer out of bed and how I type, and Barnum can’t help with either of those. In fact, Barnum has been living up to his full Bouvier des Flandres potential as a service/hindrance dog: he broke my computer.

I have an all-in-one computer, which is basically like a screen with no tower. The CD/DVD disc tray slides out of the side. The computer lives on my overbed table, and I live in bed. And Barnum spends a lot of his time on my bed because otherwise we wouldn’t get to interact much!

One day, I’d taken out a disc and was about to put in another one, and Barnum glimpsed Something Very Exciting out the window and whipped his big, hard, heavy Bouvier head around, smacking my disc drive as he went. The disc drive cracked and a piece fell off. Barnum, of course, didn’t even notice that he’d hit anything.

I got the drive replaced, but even though that was a hardware issue, not a software issue, ever since then my computer has been extra glitchy. Let this be a lesson to you. (I don’t know what the lesson is, except maybe, “Never ever wever bever leave your disc drive open, especially if you have a big, enthusiastic, klutzy dog in the vicinity.” Yeah, I’m gonna go with that as the lesson.)

Anynoodle, it especially sucked because I COULD NOT USE MY HANDS and I didn’t yet have my speech software, so I was extremely bored because now I couldn’t watch DVDs, which — aside from listening to books on tape — was about the only form of entertainment or activity available to me. And what is the thing that has been the most buggy ever since I got the drive replaced? The media player. Le sigh.

I’ll post in the future (at my new blog) about the training we’ve been doing. The tedious training has been extinguishing barking out the window which is a behavior that I created and reinforced for a long time before I realized I was the cause. Facepalm, indeed.

The more fun behaviors, on those rare days I’m up to doing them, are working on calm behavior for hind toenail trimming, which involves clicking him for tail position (which I’m using as an indicator of his level of arousal) and teaching Barnum to carry a bag and deposit it in a box near the kitchen. Once this behavior is solid, I can have him deliver dishes and things I’m done with to my PCAs, even when they’re not here. It will be quite a while before that’s a finished behavior. I hope to blog about these training issues in the coming weeks . . . but not here!

Which leads me to my Very Exciting News:

My brand new website is up! Yeehaw!

Do you want a tour?!

You do? (I’m just pretending you said yes.)

GREAT! Follow me. . . .

This is the foyer. Some people call it the “home page,” but I think foyer sounds better (especially if you pronounce it the French way — foy-`yay!) — or the vestibulary, if you prefer.

As you can probably tell, the walls (and ceilings and floors) have just been cleaned and painted (all nontoxic virtual paint, of course), so I hope you don’t mind taking off your shoes. And your dogs’ shoes. Thanks.

OK, we’ll start our tour with the south wing of the house. First stop is the writing parlor. all furniture hasn’t been moved in yet. We’ll get there. But adjoining the writing parlor is. . . .

The literary salon! Where discussions about being a writer with a disability or writing about disability take place. And you’ll notice just off to the side, this room leads to an even larger room which is . . .

Yes, I know it’s empty now. There are just some packing crates and suchlike. BUT, this is the nursery of my mind. This room — Crip Erotica: The Book! — is the one I am the most excited about! I have been dreaming of building this room for years, and I already have a lot of the plans drawn up. I am really looking forward to using this website is to nurture, support, and grow what will be born in this room.* But it takes a village, to uh, you know, create a crip smut collection. I don’t know which village that would be, but I’m hoping to start finding the villagers soon. (More on that later.)

Moving to the next room is the disability erotica I’ve already published. This is cozy, don’t you think? There’s art on the walls. Has a more lived-in feel. I’ve been hanging out in this room for over ten years! It’s helped give me the confidence to build the “nursery” mentioned above.

Now, if we’ll take a stroll across hall we can enter the north wing of the house, where you can see the Activisting center. My longtime readers will find posts you remember about disability rights, access, environmental health issues, service dog awareness, and other assorted (no, not sordid — that’s the south wing) posts.

And I’ll still be blogging about lots of the stuff you’re used to. For example, I’m writing a couple of posts now for the Assistance Dog Blog Carnival. I’m going to try to get those of you who are WordPress subscribers to After Gadget transferred over as subscribers to SharonWachsler.com. I hope the rest of you will subscribe to the new website/blog, too. (Pretty please?)

See you all at the new pad (I hope)!

Peace.

-Sharon, the muse of Gadget, and Barnum, Disc Drive Destroyer

REPRISE life w/lyme, mcs, cfids: a different kind of typical atypical

This post is for the June Disability Blog Carnival at never that easy. The topic is “Arbitrary” — anything on disability you want people to read. I chose to reprint a post that I wrote in May of 2011, with this new introduction. May is both Lyme Awareness Month and MCS Awareness month, and I was trying to blog a lot on both illnesses that month.

The reason I chose this post is that it’s not at all like my typical posts. As an editor and proofreader, I usually try to have “clean” posts — proper capitalization, punctuation, grammar, and spelling. In this post, not only did I not conform to standards, I actually stopped myself from backspacing to eliminate errors, something I normally do a great deal. I didn’t do this to be annoying. I did it for two reasons, and I’m reposting it for a third.

One reason is that when you’re severely in pain and exhausted, things like holding the “shift” key and another key at the same time to create a capital letter, or needing to take a hand off the keyboard to move the cursor and then get that hand back on the keyboard to correct an error, can be too darn hard. That effort often keeps me from writing. I really wanted to blog that day, and I didn’t want my pain and illness to stop me. This was me saying, “Fuck you,” to my limitations, and to the tyranny of internalized ableism.

The second reason is that I do a great job of “passing,” especially in written form, around my cognitive impairment. People who are not part of my day-to-day don’t understand — and often, really, don’t seem to believe — the amount of cognitive impairment I have. Being basically smart, well-educated, and articulate, I have more to fall back on than someone who didn’t have these benefits. Also, there are tools like spell-check and grammar-check, both of which I use. I usually reread a post, sometimes several times, to fix errors, and I do a lot of backspacing to fix errors I find in previous sentences.

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

The third comment is for all the writers and other language snobs out there, of whom I am one! I am a total “wordie” (as food is to foodies, words are to wordies — or logophile, if you prefer), a grammar geek, a punctuation nerd. I make no apologies for this. AND, there is a difference between enjoying and finding pleasure in well-written prose, in praising readability, and looking down on people who make errors or who don’t know a lot of the basic rules of grammar, punctuation, and spelling. As a writer, I have a lot of online friends who are writers, especially on Twitter. I can’t tell you how many times I read snotty comments about people who write in all lowercase or people who misspell or whatnot. I wanted to reprint the post below to say, “Hey! There are sometimes good reasons why a person might not use the shift key. There are physical and cognitive disabilities that might make following basic rules of grammar onerous or even impossible. Check your ableism at the door, please! We still may have something worthwhile to say.” I believe the post below does have something worthwhile to say, both because and in spite of the copious language errors.

– Sharon

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

Update: Illness, Writing, Not Much Training

Howdy.

This is possibly the longest time I’ve gone without posting since the early months of this blog. There have been a confluence of events that have brought about this non-postingness.

One is, and I know this will come as a total shocker to those of you who follow my blog, I’ve been really sick. For realz! What with all my chronic illnesses, you’d think this wouldn’t surprise me, but it still kinda does. The issue is that I have been sicker, overall, since Octoberish, with some periods of being much sicker and/or much longer than usual. Every once in a while, I have an “up” day, and I think, “Huzzah! The suckiness hath lifted!” But nay, ’tis not so. The form changes, but the suckiness continueth. For the last couple of weeks, the major issue has been migraines every day.

This is really the first time since my Lyme treatment started to work, around spring 2009, that I have plateaued or dipped and not made a comeback eventually. My doctor and I are not sure what to make of this. A reinfection? An undiagnosed coinfection? A resurgence of babesia (which we had to stop treating because my liver couldn’t handle the antimalarial drugs required)? Or some of the drugs have stopped working? Or are one of the drugs making me sick?

It could also be an MCS thing — foods I’m reacting to that I’m not aware of. Inhalant allergies could have gotten worse, like dust and mold. Maybe there’s some sort of outdoor pollution occurring that I don’t know about that’s doing me in? The most frightening specter of all — could I be allergic to Barnum? I just can’t even deal with the hideousness of that proposition. I was allergic to my cat for years, not knowing he was the cause of my round-the-clock migraines. This worries me.

But all is not gloom and doom. There are good things going on, too. I’ve been working away at helping to organize the fundraising auction for Marlena, my NVC teacher. I’ve learned a lot, and it’s given me an excuse to interact more with some of my fellow students. (BTW, if you want to donate something and you haven’t yet, you have about ten days to get me the info.)

I also have written two long pieces. One is an essay for a really kick-butt anthology on intersections of oppression in feminism (most of the pieces are primarily about race/racism in feminism; mine is mostly about ableism in the feminist movement). The other writing project was a long, complex piece of erotica that was inspired by a documentary I watched on Frida Kahlo. And I’m hoping, if I hear back from various editors in time, and if I’m functional enough, to get in a few more submissions — work that is already done and just looking for a home. (This time of year seems to be heavy with deadlines; I don’t know why, but it always is.)

After I got these two pieces in, I found out that a book that was coming out that I thought had my work in it does not actually have my work in it. My story was accepted by the editor, but when it went to the publisher, they cut it. Normally, I’d have heard months ago, but the editor’s computer got hacked, so her email informing me never got to me. I found it out when I saw my name was not listed on the back cover of the book! It doesn’t happen often, this editor-says-yes-publisher-says-no, but when it does, it really bites. It feels like you’ve been sucker-punched: “You’re in! You’ll get published. You’ll get paid.” Then several months later, “Oh, by the way, the publisher hates your piece (cuz, although nobody says it, they don’t think it’s ‘marketable.’) Sorry!”

But that’s just a blip. The really big problem with writing is that when I write, I can’t do anything else. I can’t train with Barnum. I can’t talk on the phone to friends. I can’t blog. I went more than two weeks without bathing to get the short story done by the deadline extension the editor gave me. And I have to push myself beyond my total physical and mental breaking point to do it.

So, why do I do it? Well, partly because sometimes, when I write, I feel ridiculously happy and connected to myself and some sense of purpose that I never have in any other part of my life. Some of it is that usually these writing gigs pay something (paltry as it might be, and believe me, it’s generally quite paltry), and I have very expensive illnesses, and I worry about spending more (on supplements and air filters and house maintenance and my Lyme doctor who isn’t covered by insurance) than I am bringing in. So, this is a feeble attempt to put my finger in that dam. Some of it is that I just don’t know who I would be if I wasn’t a writer. I think I wouldn’t be me, anymore.

And, along those lines, I am working out a plan with the folks at AbilityMaine to return there as a staff writer. I’m really excited about this. It feels weird because Norm, my dear friend who died three years ago, founded AbilityMaine. So, it took some adjusting to the idea of working there without him, and I sort of flopped around undecidedly for a while. But I do know Norm would be very happy that AM is still in existence, and he was the biggest booster of my writing of anyone I’ve known, so I’m sure he would be happy for me to return. It’s just . . . odd. I will fill you in as developments, er, develop. And meanwhile you should start reading AbilityMaine so you can bask in its fabulousness.

Also, Breath & Shadow, the literary journal I founded, was an outgrowth of AM, and I might be writing for them, too. Again, we’re still not sure exactly how this will all shake out, but if you don’t read Breath & Shadow, you really should, because it’s been in the excellent hands of Chris Kuell since I left in 2007.

One great thing about writing for AbilityMaine is that I will once again get to be a free agent! I won’t be constrained by the whims of the publishing world’s ableism and other bullshittery. As long as I know what the parameters are of what they’re looking for, if the writing is good, it’ll get published. This is such a rare and wonderful and almost-unheard-of-thing in the writing world, I’m incredibly grateful for the opportunity.

Where is Barnum in all this, you may wonder? Mostly on my bed, leaving big piles of dirt and dog-hair tumbleweeds in his wake. His coat is really long now, and he does look gorgeous as long as we can keep up with the grooming (which is a bear!). The good part about me being so consumed in my writing is that he is extremely eager for my attention when I have it to spare (or even when I don’t). So, he’s been extra cuddly, and he’s also very into training on the occasions I’m up to it.

Primarily, we are working on generalizing and learning the cue for turning on and off lights, generalizing and learning the cue for pulling doors shut (as opposed to nudging them shut or pulling them open), and adding some “attention seeking behavior/alert” to his “go find person” skill. (More about that last one in a separate post.) We’re also working a little bit every day on handling/grooming, such as keeping his mouth still with my fingers or a toothbrush inside, allowing grooming of the “sensitive bits” of his coat, recall, fetch, and working retrieve.

This Monday, February 27, will be our two-year Gotcha Day anniversary! Can you believe it? I haven’t decided what I’d like to do for it. I really want to do a photo essay or video of all the things he’s learned in two years, but between technical difficulties and extremely low energy, I think that’s unlikely. But, I am very proud of him.

Good night all. Hope to post on or before our Gotcha Day.

– Sharon, the muse of Gadget, and Barnum, SD/SDiT

Hackers Have Gotten Smarter: Some Tips for What to Look For

And in other inexplicable computer news, this post got published with NO CONTENT, and without me hitting the “publish” button. Argh! (Deep breaths. Deep breaths.)

Here are some things the hacker did that made it harder for me to clean up the mess and that tricked some people into clicking the link:

1. They did it during the night. At 4:30 EDT, when I was asleep. Not that it took them more than 20 minutes to email all 1000 people in my address book, but if I had started getting those bounces when I was awake, I’d have realized something was up sooner.

2. This one is key: They only put in five or six addresses per email. The main reason to do this is because AOL has bulk mailing policies to prevent spamming. If you email more than ten people in one email, it can trip it. If you email many people in a few emails, it will trip it. So, AOL didn’t shut down my account and stop them.

3. Putting only a few addresses in an email also tricked some people who received the email into thinking it was legit, because we are used to spam emails having very long To: lines. Someone even said, “I clicked on the link because it was from you and there were only a few people it was sent to.”

4. They put a different subject line in every post, so I couldn’t just email everyone and say, “If you got an email that says “blah blah blah,” delete it. (I also didn’t want to email everyone because then I would be bulk mailing, AOL would shut down my account, and I would again have over 400 bounces to delete.)

5. They put a signature line in. Not my signature, but every email had some sort of random quote in the signature field, so it looked more authentic, if I was the kind of person who quoted people in my signatures (which I’m not, but a lot of people do).

Moral of the story, kids:

If you get an email with a link, and basically no info as to what the link is about, do not click the link! Email the person whose account it is from to find out if it’s legit or if they’ve been hacked.

This is particularly true for anyone you have not heard from in a long, long time. Someone you interact with frequently, you know what they have in their signature line and you know what they’re involved with. It’s easier to spot a hijacked email. If you get an email from out of the blue from someone you haven’t interacted with for a long time, that is a big red flag right there.

When in doubt, DON’T CLICK ON THE LINK. It doesn’t matter if it’s from someone you know. That’s why hackers steal others’ accounts!

– Sharon

P.S. If you get another fishy email from me, please tell me. There still seems to be the occasional fishy thing happening, and I can’t tell if it’s just delays in certain emails being process, or if my account has been breached again.

My Email Was Hacked; Don’t Open Weird Link

Hi all,

Just a quick head’s up. If you got an email from me during the night (around 4:30 AM ET) with a strange subject line and weird link, DO NOT OPEN IT. My AOL account was hacked. I’ve changed my security settings and am deleting the 400+ bounced emails now and replying to concerned replies. I apologize to anyone this has inconvenienced and hope nobody clicked the link.

If you get any other suspicious emails from me, please tell me, because it means I haven’t fixed the problem (but I think I have.) I regret, again, that this occurred.

I’ve tried to put the word out on FB, Twitter, and to the list-servs I’m on. I don’t want to email everyone in my address book to warn them, because then it’ll be like going through it all again! But please do spread the word to anyone you know is in my address book, if you should happen to be in contact.

Grumpily,

Sharon

Waspish Wednesday: The Obstacle to Training My Service Dog

A Despair, Inc., Demotivator

[To enlarge image, click here.]

The theme for this month’s Assistance Dog Blog Carnival is “Obstacles.” Lately it’s become very clear what my biggest obstacle is in training Barnum: me. Or, to be kinder and more accurate, my panoply of disabilities and their attendant symptoms.

While searching for inspiration to create a catchy title for this post,I  googled famous quotes on obstacles. I ended up at the proverbia.net Obstacles page. Here are two representative quotations:

Obstacles are like wild animals. They are cowards but they will bluff you if they can. If they see you are afraid of them… they are liable to spring upon you; but if you look them squarely in the eye, they will slink out of sight. ~Orison Swett Marden, American author and founder of Success magazine

Stand up to your obstacles and do something about them. You will find that they haven’t half the strength you think they have. ~Norman Vincent Peale, American preacher and author of The Power of Positive Thinking

What I noticed as I read through the quotes (aside from the fact that, except for unknown authors, these were all said by successful white men) is that the underlying message to all of them is this: Obstacles aren’t real. What you think is an obstacle is actually your personality defect. Get some perspective, little missy! Ditch the bad attitude and start thinking B-I-G! If you fail, it’s because you didn’t follow the dream recklessly/doggedly enough, and it’s your own damn fault.

Uplifting, no?

Although most of these quotes are from a century ago or more, the ideas they espouse are the same victim-blaming, magical-thinking-induced ideologies that I and every other person in the US (and most other countries) are relentlessly subject to today. (If you need some convincing, please read Barbara Ehrenreich’s excellent book, Bright Sided: How Positive Thinking Is Undermining America. She lays it all out much better than I ever could.)

Many of us with disabilities or serious illnesses get told by family, friends, strangers, even doctors how positive thinking, and mind-over-matter, and mind/body connection, and blah blah blah is going to cure us. How if we think positive! And act cheerful! And smile! And be good little poster kids and supercrips and Brave, Inspirational, Role-Models (because therebutforthegraceofgodgoyou), we can overcome every obstacle! After all, isn’t that what the American dream is all about? Isn’t that what all the commercials tell us — about limitless growth, wealth, expansion, progress?…

In fact, this quote was my favorite of the bunch at the Proverbia.net site because it is just so brutally honest in its social Darwinism:

The block of granite which was an obstacle in the pathway of the weak becomes a stepping-stone in the pathway of the strong. ~Thomas Carlyle, British historian and essayist

That’s the truth of it: If you’re “weak,” too bad for you. If you’re “strong,” you get all the cookies. (And by cookies, I mean, money, security, respect, freedom, independence, choices, opportunities, etc. In a nutshell, privilege.) Basically, “weak” can just be a stand-in for whatever misfortune or trait a person might have which puts them on the margin. Of course, “weak” can also literally mean “weak,” and that’s a reality for some of us, too.

My biggest obstacles are not imaginary. They are not any sort of personal failing on my part or Barnum’s to be determined, smart, dedicated, hard-working, or creative enough. Because, in all honesty (but not modesty), I have all those traits. And they’re not enough. My severe pain and mondo-weirdo sleep disorders and exhaustion and inability to think clearly and inability to drive and inability to leave the house and inability to leave my bed and struggles to walk, talk, bathe, etc., all affect my training with Barnum in every possible way.

It is so damn frustrating! I want a trained SD desperately. It’s true that I am training him to a higher standard — in terms of both the solidity and number of skills he’s learning — than I used with Gadget or Jersey. Nonetheless, I’m also a better trainer, and we’ve been working longer than I’ve ever worked to get a SD completely trained. I don’t want to just keep training forever! I want to spend time with Barnum working, playing, getting out and about, having fun, being free and independent. I want this so bad! And lately it has become so starkly apparent that the reason we are so behind in so many areas is not him; it’s me.

When he started rounding the corner to two year’s old, a lot of dog maturity suddenly clicked into place. He has more energy. He catches on to ideas much faster. (I wrote recently about how we’re having more “light bulb moments.“) He’s more enthusiastic and confident. He wants to train. Indeed, he wants to interact with me all the freaking time! He’s insatiable! He’s turned into a training machine. This miracle I’d been hoping for of a dog who really wants to work, who chooses to be a service dog, is coming to pass. And much too much of the time, I’m so damn tired, I just want him to leave me be. I want peace and quiet and rest.

And I also want so much to work, work, work him. Lately, when we train, the clicker magic is there. He has recently — within the last three weeks — either learned the beginnings of or dramatically improved aspects of the following behaviors:

• Opening the refrigerator
• Opening my bedroom door (almost a completed behavior and on cue) and opening the bathroom doors (understands the cue but hasn’t figured out how to work the doors yet)
• Pulling my bedroom door shut from the outside (which is a completely different set of behaviors than shutting it from the inside)
• Carrying an item in his mouth from me in bed to a PCA in the hall
• Standing or sitting on a table to be groomed
• Going into crate as a default when I start eating a meal (not 100 percent yet, but more often than not)
• Nose-targeting my feet (which will later be shaped into pulling off my socks and helping me move my legs when I can’t do it on my own)
• Generalizing the light switch UP skill
• Learning the light switch DOWN skill
• Going to find a named person to let them know I need help
• Retrieving novel objects from the floor
• Holding his head and mouth still (no chewing or licking) for tooth brushing
• plus doing ongoing work on go-to-mat, down-stay, sit-stay, zen/leave it/self-control, come, crate, quiet, separation anxiety, and other things I’m forgetting.

All of which is probably leading you to think, “Damn! They’re doing great! Why is she complaining? Clearly they are overcoming obstacles, otherwise they wouldn’t be showing all this progress, right?”

Yes and no. Yes, we’re making progress. Nobody is more aware of that or more excited about it than I am — believe me! I’ve waited a long time to see this. There was a time I thought we were hopeless! I’ve tweeted and posted on our Facebook page, and on the Training Levels list, about how Barnum has really started to help me with some important skills, especially when I’m very sick. This is terribly exciting, and there have been a time or two I almost wept with gratitude and joy that we have achieved this place. I also tend to shower him with praise, hugs, and kisses when these events take place.

What I’ve noticed the most, when I actually need help, and I ask him to do that thing, not just as a training exercise, but because it would really be damn useful, and he does it, it’s a totally different world we are entering. It’s the world of partnership, of a new level of communication, of moving from mommy/baby or teacher/student to something more like, well, partners. It’s really the word that sums it up best, because it’s appropriate in every nuance and meaning of the word — equals, mutual supports, working team members, family, beloved, etc.

But. . . .

We are not there yet. Most of the skills above are still in their youth, if not their infancy, in some cases. Most of the time I’m still putting the energy out, out, out, and only sometimes is it coming back. By his second birthday, I really had expected him to be working full-time, with just polishing of a few skills. Instead, only a few of his skills are in working order, most of them are under construction, and a few haven’t even been introduced.

So, yes, the reason we have achieved what we have, despite the immense obstacle of my illness, is due to our determination, smarts, dedication, hard work, and creativity. We certainly wouldn’t have gotten here without all that. But the fact remains that we still have so very far to go because the obstacle of my illness is real and cannot be “overcome” as in the endemic supercrip trope. We can only chip away at this block of granite a little bit at a time, sometimes with a pick-axe, and a chunk comes tumbling down, but mostly with a dull pocket knife, or a bent spoon, or sometimes just a toothpick or a thousand drops of water over the course of years that hollow out a smooth indentation where I rest.

– Sharon, the muse of Gadget, and Barnum, eager SDiT

Waspish Wednesday: Please Don’t Comment on My Voice!

This post cross-posted at ChronicBabe.com.

Or, Behavior Modification (Training) Works on People, Too!

I’ve been disabled by chronic fatigue syndrome and multiple chemical sensitivity since 1995. However, when I became infected with Lyme disease and two other tick-borne diseases in 2007, I developed several new symptoms. One of the strangest and most difficult has been intermittent vocal cord apraxia, which means that sometimes I can’t make voluntary sounds, most notably speech.

The amount of voice I have occurs on a spectrum from total inability to speak, to severely affected (like a cerebral palsy accent), to scratchy and hoarse (like laryngitis), to completely normal. Most of the time, my voice slowly improves over the course of a day: upon waking, I can’t make a peep, but by nightfall, I can talk a blue streak. Other times, it’s very sudden: at noon I can’t say a word, but by 1:00, I speak fluently. Conversely, I may be talking fine until a chemical exposure or an exertion (e.g., taking a bath) steals my voice in a flash.

Frequently, when I can’t speak, it’s the sign of a “bad day,” when I’m also immobilized by severe pain and fatigue. However, there are times when I can’t voice, but I’m not feeling worse than normal — as well as days when I can speak, but I feel like hell.

Unfortunately, most use my voice as a barometer. Not only do they assume that if my voice sounds good, I must be feeling good, they also jump to the conclusion that I am recovering or have been cured! Virtually everyone* to whom I say, “Hello,” on the street or the phone, immediately responds with comments like these:

• “Hey, you’re talking! You must be thrilled!”
• “Your voice sounds so strong today! You sound really energetic!”
• “Oh dear, I thought you were getting better. . . .” (This is said with deep disappointment, followed by an awkward pause, then a hurried escape.)

I usually just grit my teeth and change the subject as fast as I can. I understand the drastic changes in how I sound can be confusing, especially to new people in my life, but for people who have experienced the vagaries of my communication issues for years? In those cases, I want to scream, “Shut up about my voice! Just ignore it and treat me like a human, not a symptom! Stop guessing what it ‘means’!”

I don’t scream, especially because I know that these remarks — particularly the “your voice sounds terrific!” variety — are intended as compliments. Nonetheless, at a certain point, I decided to ask people not to start every conversation with a discussion of my voice. I usually say something like, “I know you’re trying to be supportive and encouraging, but I’d really prefer if you didn’t comment on my voice. You see, almost everyone does this, and it gets really tiresome.”

The response is usually a surprised and confused pause, followed by profuse apologies. I interrupt this, too, saying there’s no need to apologize, that they didn’t know, and that it’s just information I’d like them to have for the future. The best response is a “thank you for telling me.” This tells me they have not taken it personally. So far, this strategy is 100 percent effective; if I make this request, it is always honored.

Everyone has their own preferences about whether, how much, or with whom they wish to discuss their health or functioning. I personally restrict such discussions to family, and close friends who are also disabled. I know I’m not alone in my struggle. Like others with disabilities, I’ve had people comment on, and try to judge the state of my health based on, my use or non-use of various assistive devices (wheelchair, oxygen, filter mask, service dog) or my behavior (standing, sending an email, writing a post, leaving the house).

My advice to chronic babes who’d like others to ignore perceived clues to the vagaries of your condition? Tell them! My advice to those who I speak to on the phone or on the street? Ask about my dog training, writing, or opinion on the weather — just don’t mention my voice!

*The exception to this are those who see me, day in and out, with and without voice, and are used to its vagaries, such as my partner, my personal care assistants, and a small number of friends who are also disabled.

Waspish Wednesday: Receive Free Sn*ggle Sample (Then Vomit)

Wow! Sometimes I really have to wonder how I get on various mailing lists or get certain targeted ad campaigns. (Although, as we shall discover, I did eventually get a hint about this one.)

I mean, I understand why 80 percent of the FaceBook ads and AOL ads I see are for dog food or dog training or donating to the ASPCA. A little less clear is why I get ads for “Hunky Men!” or “Male Singles in Your Area Want to Meet You!” But, since I generally check “single,” in the categories asking me if I’m married, divorced, widowed, or single, I can sort of see that, too. (Most of those forms don’t follow that up with, “Oh, and by the way, are you a lesbian? Cuz we were just assuming you were heterosexual.”)

Be-that-as-it-shouldn’t-be, I was quite amazed at what slithered into my email inbox today. The subject line/headline is, “Receive a Free Sample of Snuggle(R) Fabric Softener!”

Yes, really.

Let’s start of with this question: Is there anyone on the planet who actually likes Sn*ggle? Even before I was chemically injured and developed multiple chemical sensitivity (MCS), I — and all my friends — loathed the Sn*ggle bear. Any time an ad came on with that noxious pipsqueak of a teddy, we wanted to throw something heavy at the TV. My favorite picture of the Sn*ggle bear was drawn by my friend Peggy Munson, for her page, Welcome to Camp NoStink. If you can view images, I definitely encourage you to check it out, because it’s hilarious.

If you can’t, here’s my best effort at doing the drawing justice. [Image description: A cartoon that looks as if it was drawn on a computer. An impressively realistic-looking brown grizzly bear snarls, with mouth open, holding the “Sn*ggle bear” by one ear. The Sn*ggle bear has the happy, vacant expression of a stuffed toy. It is holding a box that says, “Fabric Softener” under one arm. The other arm has been severed, with a bloody stump at the shoulder socket. The disembodied arm is flying through the air. Blood squirts out of the socket, the amputated appendage, and the Sn*ggle bear’s ear that is hooked on the grizzly’s teeth.]

Of course, this is nothing compared to the fact that Sn*ggle fabric softener is one of the worst toxic offenders and creators of misery for people with MCS. The problem with scented fabric softener is not only that it reeks of toxic chemicals that make me sick. It also, because of the adhesive properties created for these fragrance chemicals, adheres forever (really — you can never wash it out) to everything it touches or fumigates. Also, because it’s used in dryers, which are vented to the outside, it is forcibly blown at anyone who is nearby. Interestingly enough, some of the chemicals used in dryer sheets are dangerous when heated!

If you really want to hear a person with MCS rant about what makes our lives hell, mention fabric softener.

The email says, “Does your laundry need a little boost of freshness? Sn*ggle Fabric Softener comes in a variety of fragrances to put that extra ‘Ahhhhh’ in your clothes. . . . Just answer a few questions & we’ll send you a Free Sample!”

“Ahhhh” is right. But, I don’t think the tone comes across just so. It’s more like, “Aieeeee! Augh! Ack, ack, koff! Koff! Koff! [Vomiting sound].” And then a quiet moan of misery for the next day or several as the migraine settles in.

But for “Gift fulfillment” you must answer questions from Lifescript Advantage Women’s Health. This turns out to be your contact information, age, member registration, survey questions, and “completion of question asked in conjunction with this promotional offer.”

I googled Lifescript Advantage and found a page with a rotation of six advertisements articles on various topics. The first shows a picture of the same woman in two poses (and two outfits!). In the first pic, she is smiling happily (and wearing a yellow V-neck sweater). In the second, she is hanging her head with a big frowny face (and wearing a blue V-neck sweater). The caption is, “Up or Down? 10 Warning Signs of Bipolar Disorder.” I kid you not. We all know that if your mood changes (to match your sweaters), you must have a major mental illness, right?

The next one shows a headless guy in a snazzy suit holding a red rose out to you. (For me? Really? Aw, you shouldn’t have.) The caption is, “Is Mr. Right All Wrong? 7 Tips for Telling if He’s a Dream or a Dud.” And this relates to women’s health, how?

Then there’s the picture of a sausage held above a plate of bacon, which says, “Bacon vs. Sausage? Which is really healthier? Plus 8 other diet-friendly food swaps.” I’m going to guess, “Neither, but they’re both delicious!” (Now I’m hungry!)

There are two that actually seem to relate to women’s health, and they are, of course about (big hint: lots of PINK! BRIGHT PINK! REALLY REALLY PRETTY PINK BOWS!). Yes, breast cancer. Breast cancer, which is at epidemic proportions because of what? Carcinogens in our environment. Carcinogens such as benzyl acetate, chloroform, and limonene, among many other toxic chemicals found in fabric softener. (Yes, chloroform. You’ve heard of it? The stuff that’s used to knock people unconscious?)

However, the most disturbing, jarring, and all-out bizarre advert is the one of former President George W. Bush, wearing his little flag lapel pin, standing against a blue background, grinning as if he is still the President! Agh! Agh! Agh!!! No, no, no, noooooooo!!!!!

Okay. I’m alright now. Just needed to take a few deep breaths into a paper bag with my head between my knees. And check my calendar.

So, why am I being assaulted presented with a photo of the worst thing to happen to the planet since, well, I dunno, the discovery of pesticide? “Bush’s New Campaign,” it says. “Ex-President Launches Initiative to Improve Women’s Health.” Really.

Really? Really? Bush. Improve? Women’s? Health?!

In terms of his domestic policy, a Mother Jones article on Bush “waging war on women” reports:

Who has Bush placed in important posts involving women’s health, education, and employment? Well, darling, according to Bush appointees, when you get PMS, pray. If your husband beats the crap out of you, just agree that wives should be submissive to their husbands, and besides, as everybody in the Bush administration knows, women beat up men just as often as men beat up women. Oh, and if you get breast cancer, it’s your fault because you had an abortion—a conclusion that particularly startled people who study the disease.

Elsewhere, Bush imposed the “global gag rule,” which meant that any group receiving U.S. funding for family planning was banned from mentioning abortion, even when medically necessary. And how is women’s health in Afghanistan and Iraq, after Bush started the wars there? Not so good, I’d think, if any news was allowed to leak from the front lines. And all the environmental destruction he caused that is continuing to unfold? Good for women’s health, huh?

Well, there’s just too much to list, obviously. Right at the beginning of his presidency, NOW put out their “Bush Whacker” campaign round-up of W’s record on women’s rights. This is the harm he caused before he even became president.

So, yeah. This seems about right. When you know who the chemical corporations are snuggled up with, it makes sense that they run a “Women’s Health Issues” website with pictures of bacon, George W. Bush, and “9 Reasons Men Cheat.”

– Sharon, the muse of Gadget, and Barnum, SDiT

P.S. The weirdest thing of all was when I uncovered the address of who sent me this particularly nauseating slab of spam. It came from Free_SnuggleSample [at] homosexualse [dot] net. So, someone does realize I’m a lesbian. I’m not sure that’s a good thing.

I Think Barnum Is Allergic to the Pond

Or, Remind Me Again Why I Do This?

(Raise and train and partner with service dogs, I mean.)

When Barnum was a puppy, and I was spending most of one of my parents’ visits attending to him, my mother referred to him (with some sarcasm, I believe), as “the little prince.” Spoil my dog? Moi?

But, actually, the name kind of stuck, for me. It reminded me of the book I read in French so long ago, Le Petit Prince, which is a very sweet children’s book. At night, I kiss Barnum and say, “Goodnight, sweet prince,” before I go to sleep. (I guess this is the first-annual After Gadget literary-allusions post, eh?)

But all is not well in the kingdom. No. And We are not amused.

I am in so much pain tonight. (It’s Sunday night. I don’t know when this will post.) And what I want to know is this: Do they make wet suits for dogs?

Here’s the sitch. A couple of months ago, Barnum started to itch — he’d scratch his armpit or flea-bite his arm or his butt or lick his thigh. Mostly though, he just scratched here and there — his head, his ribs, his butt, etc.

This has not been like any problem I’ve had before. When Gadget got a skin problem, it was severe and specific. When I first got him, he had diarrhea all the time and was licking and biting himself constantly. Once I eliminated foods he was allergic to, all those symptoms went away. Then, after vaccines or anesthesia or other medicines or chemicals, he would suddenly have a flare, and I’d have to muzzle him to keep himself from licking himself raw.

But, he always chewed the same locations, and it was always clear that something had set it off — very dramatically. That made it easier to figure out what the precursor had been.

Barnum’s itchiness, on the other paw, has been all over the map. It’s sporadic and non-specific, and it ranges from occasional to moderately frequent. Over time, it seemed to be getting worse, although his skin and coat look gorgeous. If I didn’t spend all day with him, I might not have realized so soon that there was a problem.

My first fear was fleas. I had found some strange little bugs on me at night sometimes that I was afraid were fleas. We gave him a bath. We vacuumed. I gave him a Program pill (which I prefer not to use except in situations like this, because they caused seizures in Gadget). None of that made any difference. We also found no flea bites on him or us, no flea dirt, and no fleas. I finally identified the little bugs, and they turned out to be a harmless sort of beetle. I ruled out fleas. That was a relief.

The next step was that I altered Barnum’s diet. I have stopped giving him anything but a few essentials, and eliminated the huge variety he used to get. This has made training more complicated, difficult, and expensive, because I can no longer rely on cheese or hotdogs as training treats. I’m mostly using raw beef and chicken, with cooked chicken breast for those occasions when raw is just not practical.

We have been trying to do more frequent baths, and I noticed that with more baths and the simpler diet, he has definitely been scratching less. My friend Karyn, who has also gone through a lot of health challenges with her assistance dogs, suggested that perhaps the pond was a culprit. I had never thought of this before, but due to Hurricane Irene, the bacteria count in a lot of local ponds, streams, lakes, etc., has been elevated. Thus, when the scratching got worse after a pond trip, Betsy and I bathed him.

He seemed to be doing better with the more frequent baths, so when he got his legs wet wading into the pond a few days ago with another helper (who had tried to keep him out, but when he’s hot and off-leash, if he decides he’s taking a dip, there it is), Betsy helped me wash off his legs. I wasn’t sure if all this was necessary or not, and since I’ve been so sick lately, and since exertion makes me much worse, I really hoped it was something else.

Yesterday, Barnum had his weekly long run around the pond with his dog walker. This is his super-duper most favorite time of the week. He loooooves going with Deb to the pond. She, too, tried to keep him out, but he came home caked in mud.

I was too sick and exhausted to bathe him yesterday, and I didn’t have anyone to help me. I hoped it would be okay.

It was not okay. From the time he got home yesterday, and all day today, he scratched more and more. I called my assistant and asked her to come in early to help me bathe him.

All this extra bathing has really thrown a wrench into the monkey ointment in terms of my efforts to make bathing totally fun and at-liberty, which had been going so well before. They are not at liberty anymore. He is not whining or moaning, and he doesn’t make much effort to get out, but he is not a happy camper. And we both know that if he has the opportunity to jump out, he will!

Thus, I say unto you, my dear readers: ARGH!

I was too tired, and Barnum was too displeased, for me to do training in the tub with him tonight while we bathed, which usually makes baths much easier and more fun for all, and which contributes to future baths being easier and more fun. Instead, I just kept him occupied with a steady stream of roasted chicken bits. (That’s fun to clean out of the drain trap, especially when entwined with dog and human hair.)

The good news is that he has barely scratched at all since the bath. He is all soft and shiny and happy and clean. And not itchy.

The bad news is that usually at least three or four of his walks per week — most of them, in other words — are unleashed runs at the pond. He loves the pond. I love the pond. My most favorite thing to do is to go with Betsy and Barnum to the pond and have him run around on the beach and in the water, retrieve the wonderful new squeaky ball Deb bought for him, and practice the Come Game from Sue Ailsby’s Training Levels.

I am not physically able to take him on walks on leash often enough for him to get enough exercise and recreation. I only have one dog walker whose legs and backs can withstand long, on-leash walks. Playing fetch in the yard (which he will only do for so long — he’s a bouvier, not a border collie or a Lab!) only offers so much.

We. Are. Not. Amused.

– Sharon (service human), the muse of Gadget (the first king of the castle), and Barnum, SDiT et le petit prince

I’ll Be Hosting a PFAM Blog Carnival Next Month! Please Be “Patient”!

I’m thrilled to announce I’ll be hosting a couple of future editions of the Patients for a Moment (PFAM) Blog Carnival. I hope you will participate!

PFAM is a biweekly blog carnival, described thus on the PFAM “About” Page:

Patients For A Moment is a patient-centered blog carnival – for, by, or about patients – that was started by Duncan Cross (http://duncancross.net//). The goal of the carnival is to “build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.”

PFAM has been going strong for three years, but I have rarely taken part. I love blog carnivals, and I have wanted to take part more often than I have. So, what has stopped me?

The main reason is that, since it’s biweekly, there’s not a long lead time. With my symptoms and unpredictable functionality, it’s hard for me to write blogs without a substantial amount of time to gather my thoughts on a topic that hasn’t already been floating around in my head, write it, and submit it on time (always assuming that I remember to write and submit it — a very, very big assumption!).

The other reason is that I sometimes don’t have much (or anything) to say on the given topic. (I know, hard to believe: me, without something to say!) That’s because the PFAM structure is that the host asks a question pertaining to living with illness, disease, or disability, and requests blog posts that answer that question in some way. While many are general enough that I could answer them — What are you afraid of? What are you thankful for? What are your guilty pleasures? — sometimes the questions were so specific, and my life so limited, there wasn’t much I could say. For example, your five favorite places to go (I can only go one place, aside from medical appointments); how do you stay physically active (I don’t/can’t); what is your must-have music (I usually can’t tolerate music), etc. Often, I’d think to check out PFAM and find a really great topic that I definitely had something to say about had been published the week before (or I’d plan to write on that topic and forget), and then the next one was a topic that didn’t fit me.

Another issue, though a small one, is that I don’t usually think of myself as a “patient,” and I don’t blog that much specifically about my illnesses/disabilities. My life as a disabled person is the background to almost every post, but I’m not really a “chronic illness blogger” — I don’t generally write posts about treatments, coping, doctors, how my life has changed since I’ve been disabled (I barely remember what it was like anymore not to be disabled), etc.

However, so often I find that the best way to get involved in something is to alter it to fit me — which usually involves taking a leadership role. Well then, what better way to get involved in PFAM than to host?

So, I will be hosting two PFAM editions in the next few months. Here at After Gadget, on October 12, look for the announcement of the topic for the October 26 edition of PFAM. Then, in December, I’ll host an edition at my other blog with a topic appropriate for that blog’s focus.

Meanwhile, if you didn’t know about PFAM before, and you’re interested in reading archived or new editions, or in contributing to the carnival, check out the PFAM home page!

– Sharon, the muse of Gadget, and Barnum, SDiT