Posts Tagged 'communication disability'

SD Training: “Bad Days” Provide Evaluation Opportunities

There’s a quote I like very much in Sue Ailsby’s books, Training Levels: Steps to Success*. It’s by Steve White:

“Failure” is just information. Thank your dog for revealing a gap in your training plan and get to work plugging it.

Taking this attitude makes me a better trainer, a happier and mellower person, and a more pleasant person for my dog and other humans to be around. Learning to actually adopt this philosophy has taken me many years. (Not that I am always able to have this perspective even now — sometimes I do get frustrated — but certainly I can see things this way much more often than I did in the past.)

This quote is in the explanation of testing. The Levels are a set of behaviors, divided into Steps, and each builds on the other. (Sort of like math, but much, much more fun.) So, before you can go to the next Step or Level, you test the one you’ve trained to make sure that you and dog are moving on with a firm foundation.

I have not been able to proceed quickly and efficiently through the Levels because I’ve been too sick, so we have done very little formal testing of Levels behavior. Instead, I have decided to focus on training these behaviors:

  • The behaviors I most need from Barnum on a day-to-day basis (service skills), and
  • The behaviors I can train most easily from bed or the toilet (or wherever I might be during the course of a day).

I’ll write more about how and why I’ve decided to focus on training like this in my upcoming post for the July Assistance Dog Blog Carnival which is being hosted by Brooke at ruled by paws. (And she will be giving a prize to one of the bloggers who submits an entry, which is another reason to go read the call for entries and write a post!)

Meanwhile, I thought I’d catch you up on how and what Barnum and I are doing by telling you about last Saturday (a week from yesterday). Saturday was a lousy day in some ways and a terrific day in others.

The lousy part was that I was in a very bad way, physically. It was probably one of the worst pain days I’ve had in a long time. It was the kind of day where I had to take several prescription painkillers in order to be able to sit up or move my limbs at all. Without pain medication I would have been reduced to lying in bed, crying, and unable to move all day. I couldn’t speak. I couldn’t brush my teeth. I needed help to eat.

It was terrific in that it was a chance to “test” where Barnum and I are in his ability (and interest) in assisting me. Here’s what I learned.

  • Barnum was very eager to work. Every time I called (using my “kissy noise,” which is how I call him when I can’t speak), he rushed over in eager anticipation of working (and thus, earning treats). Even though it was 90 degrees out, and he has a thick, black coat and hates the heat.
  • He retrieved my slippers for me about a dozen times because I take them off when I get in bed and then want them on each time I get out (even just to transfer to my chair to go to the bathroom).
  • I also learned that he seems to have learned my hand signal for “Take,” which surprised me because cues are Barnum’s weak point, and this hand signal is one I only introduced recently.
  • He opened and shut my bedroom door many times. He responds with the same level of reliability to the hand signal as to the spoken cue. With opening the door, he knows both and is eager and efficient regardless of where I am or what else is going on. With shutting the door, either he absolutely knows what I want and runs and slams the door (always if I’m out of bed and sometimes if I’m in bed). If I’m in bed, sometimes he is confident and runs to slam the door, while other times he’s unsure and requires shaping to go around the chair, get behind the door, and shut it. We are continuing to practice this one so that he becomes more certain of this behavior and cue. I still haven’t figured out the variable that makes the difference to him.
  • He picked up several things I dropped — pens, an empty saline flush syringe (no needle), dog treat bags — satisfactorily, including sometimes needing to go around my chair to get it, and then jump on my bed with it in his mouth to hand it to me.
  • He turned on and off the bathroom lights for me several times. He is very solid on turning on the light when we enter the bathroom. Exiting the bathroom, he still sometimes turns off the light and then immediately turns it back on again. So, “off” needs work.
  • He can hear me blow the dog whistle in my room when he is in the kitchen even with the water running and the vent hood on, but he doesn’t yet know the whistle means “come.” Sometimes he does, sometimes he doesn’t. We need to continue to practice the whistle as part of the “Come Game,” reteaching it from Level One Come.
  • He is completely solid on stand-stay/brace; he assisted with transfers from chair to toilet many times and with toilet to chair and bed to chair a few times.
  • He carried messages to, and went to get, two PCAs at different times. He is solid on the cue to get them, opening the door, and finding them. With one of them, he is solid on the whole behavior of open door, find person, nudge them, sit, wait to be sent back to me. With the other, he needed to be cued to nudge her on the first find. I am discovering that not all my PCAs are consistent in their responses to him — sometimes forgetting to ask for the sit or to ask “Where’s Sharon?” at the end, so I have now written up a step-by-step “how to” that they can refer to for “cold” retrieves (when we are not in an official training situation and neither Barnum nor they are primed to expect it). During a training situation, everyone already knows their jobs, but randomly using or testing this skill when neither dog nor person were prepared has given me important information on tweaking behavior for both people and dog. (You can see a video of this skill in this earlier post.)
  • He removed my socks a couple of times while I was in bed, which is a different behavior chain than removing my socks when I’m in my chair. It requires several positioning cues that are different — a lot more communication is required than for sock-removal while I’m sitting.
  • He opened and shut the refrigerator and shut cabinets and drawers. This all went very smoothly. Both cues and behaviors are well established. It tells me it’s time to start hanging pull-cords on some of the cabinets and drawers I might want him to open so we can start working on that behavior, too.
  • I realized that while he has learned most of the behavior for pulling down my big, heavy comforters, we have never worked on him pulling down my lightweight summer blankets or sheets. It would also help a lot if he could learn to help me pull off long pants. These are new items on the “to do” list.

There are probably a few other things I’m forgetting because by now it’s been a week, and I can usually only retain this type of information for a few hours. But, my overall point is that now, on a day when I really need him, he is actually helping me. We really are a team now. There are some skills he doesn’t know yet, or some situations in which he is still inconsistent, and those are more obvious to me on my “bad days,” too.

Not only do I now want to thank my dog for the information when he “fails,” but I can also thank my body on the days it “fails.” Sometimes it feels like there are three of us doing this training process: Barnum, me, and my body. The challenge is to coordinate the needs and abilities of all at once.

- Sharon, the muse of Gadget, and Barnum, home-style SD/public SDiT

*Should you want to buy the books, which I highly recommend, you can purchase the paper version here or the electronic version here.

QuickPress: Workig Dog

Today is one of those days when I woke up and couldn’t move much or speak. Here are some of the ways Barnum has helped me today.

  • Helped me take off turtleneck shirt. (New task that still needs a lot of work.)
  • Brought my PCA to me — perfectly. (Opened door, ran to her, nudged her, and led her back to me.)
  • Pulled off my socks.
  • Helped with bathroom transfers.
  • Shut bathroom door.
  • Took three messages to Betsy.
  • Pulled covers down. (Not all the way, but enough to be helpful.)
  • Opened and shut the fridge.
  • Shut bedroom door.

I think I’m forgetting some things, but the main point is that he is actually helping me now on days I need it. It’s good to be able to practice things and see what is really working and where the holes are that need further training.

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.

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

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.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.

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

Barnum’s First Service Skills!

I’ve been really sick lately, so not up to much of anything, including blogging.

Here, for your viewing pleasure, an almost wordless blog!

Barnum’s first service skills — shutting cabinet doors. And because we were on a roll, I added shutting a couple of drawers, too.

Please note: My voice was not working when I made this video, so what little language occurs is in (sloppy, distracted) American Sign Language. If you just want to see the action and don’t care about what I’m saying, watch the YouTube version, below.

If you want to watch the captioned version, please view the video at dotSub.

Enjoy!

- Sharon, the muse of Gadget, and Barnum (That’s Mr. SDiT to you)

P.S. Instead of doing a transcription on another page, for those who don’t watch videos, here is a transcript and description of the action in the video:

Title: Barnum’s First Service Skills: Shutting Cupboards & Drawers

Sharon: Today I’m showing you Barnum’s first real service skill.

Sharon laughs as the sound of cabinet doors slamming is heard.

Cut to Barnum shutting a cupboard without being asked.

All the cupboards are natural pale solid wood, poplar, with shiny chrome-colored round metal knobs.

CLICK!

Barnum returns to Sharon for a piece of meat. Sharon laughs.

Sharon: He’s ready! Let’s try again.

Cut to Sharon in the kitchen, opening a wood cupboard. Barnum is so eager to get his nose in there and shut it that Sharon can’t open the cupboard.

Sharon: Excuse me!

Barnum backs up but is still in the way. Sharon cues him to sit, which he does.

She opens two cupboards. He shuts them both, getting clicks and treats for each.

Sharon moves to a cupboard where one door opens against a wall.

Sharon: This is a hard one.

Barnum moves in too close again. Sharon and the camera person laugh.

Sharon: Excuse me.

She cues a sit. Barnum sits. When both doors are open, she cues, “Shut the door.” Barnum closes both easily and gains two clicks and treats.

Sharon moves to the other end of the kitchen, next to the stove. She opens a cupboard under the sink that partially blocks a very narrow cabinet door next to the oven, which she also opens. Again, she has to ask Barnum, “Excuse me.”

He right away shuts both doors. After clicking and treating, Sharon gets another handful of meat from a tray on the counter and goes to a large pantry door, as tall as the refrigerator and almost as wide. This door has no knob.

Sharon: This is a hard one.

She opens it. Barnum goes right over and shuts it on the first try. Pleased and surprised, Sharon vocalizes, “All right!”

Sharon [to camera person]: Want to try drawers? Come around here, we’ll do this one.

She opens a drawer that is nose height for Barnum. The drawer is large and filled to the top with pot holders and cookbooks.

Barnum shuts it with one quick nudge. Sharon clicks and treats.

She opens the drawer beneath it, which contains empty plastic containers. It comes to about knee height for Barnum. He shuts it with a flip of his nose. Sharon clicks and treats.

Sharon looks at the camera and raises her hands in the air, making the “applause” sign and saying, “Yay!”

The Dance Begins Again

Barnum is one year old now, and I am constantly pleased and impressed with his progress, and mind-boggled and discouraged by discovering new (and seemingly bizarre) problems. (Yesterday, Barnum refused to walk through mud, which he has walked through many times before in his life. So. . . . Huh?)

I love Barnum for who he is. (He is exceptionally lovable.) I probably won’t know for a very long time, however, if he will ever approach service-dog readiness, let alone Gadget-ability.

So, what worked so well with Gadget? What made him my yardstick?

He was a training machine, for one thing, and then we worked together so well as a service-dog team. We really had “the dance” down-pat. Not that we were perfect. We had our rough edges: Skills I trained at the end of his career, as new needs arose, were not 100 percent. I never shed my “clicker dependency” of not trusting that if I didn’t have it in a novel situation, I wouldn’t get what I needed from him. Gadget hated my van, etcetera.

Now I have introduced a different dance — Sue Ailsby’s “Leading the Dance” protocol — with Barnum; because I foresee trouble if I don’t change our routine. In a nutshell, he’s in that bratty, teenager stage where he will try to get what he wants, when he wants it, how he wants it. Which is a typical teen thing, and a typical dog thing, and a typical, um, living organism thing, too. So, who can blame him?

Unfortunately for him, that lifestyle doesn’t fit in with my plans.

Part of the problem is that he is bored and under-exercised. I’m working on that. It will really, really help a lot when I get my bad-ass powerchair working, too, so we can go on long, winter walks.

Pchair with headlights

Since my chair is made of used, recycled parts, it hasn’t been clear how to proceed with replacement parts.

You’d have thought I’d have had it fixed by now, but there always seems to be some new minor crisis to contend with that prevents me from wrapping my head around the chair repair issue.

What does “The Dance” Barnum and I are doing now entail? Keeping him leashed to me throughout my waking hours (“the umbilical cord”), singing him a silly song (really!), practicing eye contact, obedience, and downs (all stuff we were already doing) and various other odds and ends. One key factor is to make my PCAs less exciting to him, and to make me the center of his universe — more than I already am.

That’s the nuts and bolts. The feel of it, though, is actually quite a bit like trying to drag an awkward teenage boy onto the dance floor: He doesn’t want to dance, it’s stupid. Why can’t he just hang out with his friends? Oh, well, actually, maybe this is fun. Maybe I’m an interesting dance partner. But no. “This is so weird, do I hafta? Oh, now that I’m focusing on the steps, actually, this is pretty cool. I’m awesome.”

Gadget was more like one of those young ‘uns who runs out onto the dance floor and has no idea that he is a hot mess. He yanks you here and there and flings you about, having a great time, with no idea that you’re not. But, he’s also got the rhythm in him, he just needs some tutoring, and he’s willing, very willing, if there’s something in it for him. He discovers he likes to move and that his partner is actually quite cool.

Over the years, “dancing” together every day, Gadget and I were like an old, married couple. We anticipated each other’s moves and moods. Was the relationship perfect? Of course not, but it worked.

To see how Gadget and I worked together — the smoothness of our dance as well as our stumbles — video is the best. I’m incredibly grateful that Betsy and I were able to make a video of Gadget and me showing off many (but not all) of his skills. My friend and former PCA, Ryan, put the video on youtube for me, divided into two parts.

In this captioned video, Part 1, Gadget retrieves the phone, brings water from the fridge, helps with falls, and more.

Here is the transcript of the video.

Now, for the exciting conclusion: Part 2! In which Gadget alerts me to the oven timer, turns off lights, opens and shuts doors, delivers messages, and more.

Here is the captioned version.

Here is the transcript of the video.

Will there come a day when Barnum and I can waltz as well, or better, than Gadget and I did? It’s possible. I’m listening for the music. . . .

-Sharon, the muse of Gadget, and Barnum

How I Sleep (Or Don’t): Powerless/In the Dark

Today’s post is for the December edition of the Disability Blog Carnival. This month’s host is Dave Hingsburger at Rolling Around in My Head.

The carnival is scheduled to go up on December 21 (the longest night of the year, for those of us in the Northern Hemisphere). The Disability Blog Carnival always makes for interesting reading, so do check it out.

Dave’s topic, and attached metaphors, are beautiful and inspiring. Here is a tidbit:

The theme is ‘dark nights of the soul and what gets you through them’ … I’d like stories and posts about how you’ve survived those times when it was ‘darkest before the dawn’.

A couple of weeks ago, I posted the first part of this series,[1] about how I was sleeping a year ago, when Gadget was sick, then dying, then gone. Most of it was written, but not published, in February, when it was all still very fresh. The time it describes is definitely one of the “long, dark nights of the soul.”

I have sleep disturbances and insomnia from multiple illnesses; sleep issues have been part of my life since 1995. However, there are definite “up” periods and “down” periods. Insomnia-wise, some times are worse than others. The last two years have been a long stretch of “worse.”

Until I started writing today’s blog, I didn’t realize why my sleep has been particularly bad the last couple of years, and especially very recently.

Maybe people who aren’t as forgetful and confused about dates and times as I am would have figured it out — even seen it coming — but the cause seems to have been the “slumbering giant” in my consciousness.

Two years ago today, December 12,[2] 2008, The Northeast Ice Storm hit. The weight of the iced trees snapped power- and phone-lines like dental floss. Even cell-phone towers came down.

powerline_ice

I never saw the damage, I just lived its effects.

Due to my disabilities,[3] I was stranded in my house (in my bed, actually), unable to evacuate, for a week.

A week without power: no lights, no phone, no water, no internet, no plumbing, no heat.

A friend with the same disabilities as I have, was even more severely affected by the storm, ending up in the hospital — an experience from which she has yet to recover.

After it was all over, my friend described the beautiful and surreal landscape she saw through the ambulance windows. She also emailed me a picture of herself holding up a newspaper from her hospital bed. The huge headline reads, “Powerless in the Hilltowns.” That pretty much summed it up.

Ice storm trees - photo by Judy Stalus

An example of the dazzling landscape many described. Even now, though I see the beauty, I'm disconnected from the magic of such images; they evoke anxiety, not enjoyment.

[Photograph by Judy Stalus. Used with permission.]

Those were longer, darker nights than I’d ever known. I wrote out my will by flashlight in case I didn’t survive.

What got me through, in addition to my PCAs, my partner, Betsy, and my (now former) best friend with whom Betsy stayed, was “capital-G”-Gadget — my service dog and love of my life — and a lot of “lower-case-G” gadgets:

  • My book on tape machine
  • My iPod
  • My flashlights
  • My TTY[4]

Wearing my warmest clothes, covered in all of the blankets in the house, I kept them all within reach.

Little things became hugely important, such as batteries.

I turned a flashlight on as soon as it got dark. I left it on until it was light, regardless of whether I was awake or asleep. In addition to the flashlight that was on, I kept a second one, with fresh batteries, at hand. When the first one grew dim, I’d turn on the second, then replace the spent batteries of the first.

When my talking-book machine’s or TTY’s batteries lost their charge, I panicked. I’d lie there, obsessing over when Betsy would be able to come and take it away to recharge it, and if I’d get it back before dark fell again.

During the day, I limited how much “juice” I used with anything that ran on batteries. I was very careful never to expend the charge on more than one device at a time. At night, I doled out the time with my book machine or iPod, forcing myself to take breaks to make them last longer.

Although, due to sound sensitivity from Lyme disease, I have not usually been able to tolerate music in the last few years, there was one song I relied on during those too-quiet nights.

I’ve never admitted this to anyone before, except Betsy: the Beatles’ song “Let It Be,” helped me get through. I listened to it at increasing volume, the ear buds vibrating, over and over. When the iPod died, sometimes I’d just hum it and cry.

Why does relying on “Let It Be” feel like such a dirty little secret? Partly because I’m Jewish, and the song, if you don’t know much about Paul McCartney, seems to have a very Christian tone.[5] Partly because finding sustenance in a song, especially a pop song — especially a Beatles song — seemed such a cliché. (But — “Whatever gets you through the night, it’s alright” — isn’t it?)

Honestly, in the middle of that seemingly endless night, being Jewish, having no connection to “Mother Mary” — none of that mattered. It’s pretty much a Buddhist concept, letting it be, though it seems like all religions have some form of “turning it over.” When you’re powerless, there’s really nothing else you can do but turn it over, let it be.

Unfortunately, life didn’t get better after the emergency ended. It got worse, severely and quickly.

Norman_Picture

My dear friend, mentor, and colleague, activist Norman Meldrum (with Beatrix Underfoote). Norm died January 6, 2009.

Within three weeks of the storm, as I struggled with the PTSD it had caused, one of my best friends died, my best (and only nondisabled) friend ended our friendship in a nasty way, and my therapist terminated with me (largely because she refused to get a TTY).

A few months later, Gadget, my service dog, was diagnosed with cancer. Then I lost more friends — some to death, some to abandonment — then Gadget, until it felt like I was pared down to a numb nothingness.

I think the piling up of too much loss and trauma in a short period explains why my sleep has been particularly bad for two years.

It’s not just the chemical injury, chronic fatigue syndrome, and tick-borne infections interfering with my body and brain’s sleep cycles — though that certainly is enough. At a deeper level, it’s also that part of me is afraid to go to sleep because the literal and figurative darkness and stillness of night and sleep are too reminiscent of the outage.

Indeed, I can’t tolerate total darkness, or true quiet, now. At night, the sound of the air filters blowing and freezer humming, the shine of the LED lights of my clock, and the glow of my sleeping laptop give me comfort.

If there’s an outage, even during daylight — even during the summer — I panic. I never know how long it will last. I now keep lots of batteries, along with glow-in-the-dark flashlights, mylar blankets, and hand- and foot-warmers, next to my bed. For a long time after the storm, I kept a flashlight in my bed.

Lately, my sleep debt accrues with every day.

It started in November, with the anniversary of Gadget’s death. Grief hit me hard, kept me awake, dragged me to sleep during groggy afternoons, then broke me open again when I should have been sleeping.

However, even as the grief recedes, I continue not to sleep. In fact, as much as I long for sleep, I keep fighting to stay awake. It took me a long time to become aware that I was doing this. After all, if I’m desperate for sleep, why would I want to stay awake until dawn?

Norm, Gadg, and me

A happier time: Gadget and I meet Norm in Maine for the reading of my work he organized.

I now realize that it’s because some part of me recognizes these short days as the same natural patterns that occurred during the power outage. That wisp of panic urges, “Keep the lights on. Don’t stop working at the computer. Write; make sure people know you once existed. Live through the night.”

When gray light starts seeping through the curtains, I feel my body relax and begin to give way to sleep.

Of course it’s not a good coping mechanism. Sleep deprivation drives up my pain in a very predictable manner, which interferes with all other forms of functioning: speech, movement, thought.

Lack of sleep weakens my immune system, which is under the massive burden of fighting multiple infections, in addition to being upregulated for two decades, overreacting to foods and chemicals. Not sleeping also brings a host of little irritations: grouchiness, (worse-than-usual) cognitive problems, emotional brittleness, a continual buzzing in my head, and dry, itchy eyes, and on and on.

Nevertheless, there are times when I make peace with the insomnia, when I can look into the teeth of a long night of wakefulness with equanimity, even eagerness.

  • When I’m feeling antisocial or my moods are being affected by “the bugs,” and I think it’s best for all involved if our interaction is kept to a minimum. (This works even better if I can manage to sleep when others are awake, too.)
  • When I’ve gotten sleep during the day, and I know I won’t be able to fall asleep anyway, so why bother trying?
  • When I can write, which has been such a rarity for so long that I will give up almost anything to have that part of me back. (Especially since some of my best or most successful pieces were written between 2:00 and 5:00 AM.)
  • When I know I’ll have to wake up early anyway, so there doesn’t seem much point after a while in catching those one or two hours of shut-eye.
  • When Barnum has both an appetite and an attention span, so I opt to train instead of sleep.
  • When I’m hungry, which keeps me awake, so I distract myself until someone can make me a meal.
  • When I have to pee, which keeps me awake, so I distract myself until I can get to the bathroom.
  • When I’m in too much pain, which keeps me awake, so I just lie still and wait for the painkillers to work.
  • When I’m writing a blog that helps me make sense of it all.

Peace.

-Sharon, the muse of Gadget, and Barnum (snoring away)

Footnotes:
[1.] Originally I planned to write two posts about sleep, but working on this post took me in an unexpected direction, creating a third piece. Since I seem to have a lot to say about what underlies sleep — or lack of sleep — in my life I’ve decided to turn “How I Sleep (or Don’t)” into an ongoing series. Look for other new series, as well. (I’ll also pick up the thread on some I’ve dropped, such as Barnum’s training logs — lots of developments!). Back to post.

[2.] I started writing this post a few days ago. I actually do know today is not the twelfth. Back to post.

[3.] CFIDS and Lyme made me too sick to be moved, but the real barrier was MCS, which meant that no shelters — neither the homes of friends nor disaster shelters, such as fire stations, were accessible to me. In fact, partway through the crisis, I located a friend who lived nearby who also has MCS and CFIDS, who was hypothermic and desperate, alone in her home. She stayed in my bedroom with me until her power was restored. Back to post.

[4.] Even though there was no phone service for most of that time, I used the TTY to communicate when it was too dim for Betsy or my PCAs to see my lips, gestures, communication board, or signs. Back to post.

[5.] During the time of the outage, I didn’t know that the “Mother Mary” in the song refers to McCartney’s mother, Mary, who died when he was a boy. Back to post.

My Lyme Disease Is Not the IDSA Lyme Disease – Sharon Wachsler

This past Wednesday, December 8, 2010, the Chicago Tribune published a lengthy article called “Chronic Lyme Disease: A Dubious Diagnosis.” This article is so biased and filled with misinformation, I need to respond. (As  you’ll see at the bottom of this post, I’m not the only one.)

The article’s central claim supports the stance of the Infectious Disease Society of America (IDSA) that chronic Lyme doesn’t exist.

[The IDSA concluded that there is] “no convincing biologic evidence” for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics.

My experience, and the medical evidence that is part of my experience, contradict this dangerous and preposterous notion. Here is my own Lyme disease story (which will act as Part II of the Lyme Awareness Month post from May 2010, when I promised to describe how Lyme has affected me, and what you should know about it).

Summer of 2007

My case is a little different from the typical “How I Became Disabled/Ill” narrative because I was already disabled by chronic illness before I got Lyme disease. I usually try to avoid comparisons among disabilities, but I have to speak the truth: What I have gone through with Lyme disease has been much, much worse than what I experienced in my previous decade of chronic illness. I would gladly have my other illnesses double- or triple-fold more severe if it would rid me of Lyme. I’ve lost parts of my life and myself to Lyme I didn’t know it was possible for me to lose.

Here’s how it started. One day, I was sitting on the couch watching TV, absent-mindedly running my hands through my hair when I felt something sticking out of the nape of my neck. After living in the severely tick-infested area of rural Western Massachusetts with two dogs, I immediately knew this was a tick, although it felt rounder and much smaller than I was used to. Nevertheless, I wanted it off me; I didn’t want to wait to mess around with mirrors and tweezers, so I handled it as I did the dogs’ ticks — I grasped it at the base and pulled.

I heard the “pop!” that occurs when a tick is removed that’s been embedded, and as I had pulled at an awkward angle — my hand behind my head — I dropped it. Into the sofa. The falling-apart, loose-foam, shredded-upholstery black-hole-of-a-sofa. I tried to find it, but I never did.

I was pretty sure it had been a tick, but I wanted to see. I was hoping I had just pulled off some random, weird thing that was not a blood-sucking insect. However, when I checked in the mirror (two, actually, since it was on the back of my head so I couldn’t see it without a second reflection), there was a large, dark-pink raised area with a bloody center — just like how it looks if I pull an embedded tick off my dog. I cleaned it and hoped for the best.

I checked it again over the next couple of days. The area was flattening out, the scab was healing. My (mis)understanding at the time was that if one contracted Lyme disease, a bull’s-eye rash would appear immediately at the site. I saw no rash, so I forgot about the bite.

About a month later, I developed joint pain in my fingers. Out of all the symptoms I’ve had with all my health issues, I’ve never had my joints bother me. The pain was bothersome, but not severe. However, I was a writer, and I relied on my hands for work as well as to make up for functional limitations in other areas caused by my disabilities. I was very protective of my hands. I just didn’t want anything to get worse. Fortunately, I happened to have a doctor’s appointment coming up.

At my biannual appointment with my primary care physician, I mentioned the joint pain. She thought it was probably a worsening of my other conditions, but suggested a couple of tests, including one for Lyme. That set off a bell in my head. I remembered that thing that I had pulled off the back of my head. When I got home, I grabbed my hand mirror and went to look in the mirror over the bathroom sink. I parted my hair and looked at the area where the bite had been. It was flat now — no more bump — but it was definitely discolored. It was red.

I looked up Lyme disease online and discovered that the array of symptoms I’d been experiencing in the last couple of weeks were classic of Lyme — not just the joint pain and the rash, but the new kinds of headache and vertigo, the drowsy fatigue, the constant ache in my neck and shoulders, and more. Crying, I got out my dog-grooming clippers and shaved off the hair in that area so I could be certain of what I was looking at. I compared it to the pictures of erythema migrans (Lyme rashes) I’d seen online. Bull’s-eye.

Well, metaphorically, at least. Some EMs look like bull’s-eyes, but they are just as likely to be roundish, red rashes. I knew this was serious.

Large reddish-pink splotchy rash on the back of Shaved headLyme Rash

My Lyme rash (EM). The clear spot in the middle is where the actual tick was attached.

I called my PCP and told her about the tick bite and symptoms. Because I’m allergic to tetracycline, a relative of doxycycline, the frontline drug for Lyme, the doctor prescribed the second-best antibiotic for early Lyme, amoxicillin. I read all the comforting information by the Centers for Disease Control (CDC) and the IDSA that Lyme, when treated promptly, responds quickly and completely to appropriate antibiotics. I had heard of chronic Lyme, but my impression was that this was a disease that only occurred if one went years without treatment after infection. I also thought of it as a mild disease, more of a nuisance — some joint pain, maybe a little fatigue, but not a big deal.

“Something Curable and Non-Controversial”

I focused on the information on site after site that said prompt diagnosis and treatment would cure me. I even told my friends and family, who were upset and scared to hear I’d contracted Lyme, “At least I have something curable this time!”

I meant it. Yes, I was scared. I didn’t like having a frightening disease given to me by a disgusting tick, but I felt almost giddy with relief that now I would be on the road to recovery. This was just a bacterial infection. Antibiotics kill bacteria. Within a couple of months, I’d be back to normal.

It was also a nice change of pace to have a disease that seemed to be without controversy. Lyme was caused by a known microbe; nobody disputed that. Unlike my other diseases, whose etiology was still being pieced together, this time I would not have to hunt for a physician who knew how to diagnose and treat me.

I stayed on the amoxicillin. Initially, I got much sicker (which I now know is a Herxheimer, or die-off reaction), and then most of my symptoms started to improve. But not all of them. My PCP kept me on amoxicillin. Weeks turned into months, and some of my symptoms, including my rash, persisted. Different antitibiotics just made me worse. I became much sicker.

Thank God I had that rash.

Doesn’t that seem like a strange thing to say? That’s because in the hellish time to come, the rash would be the one piece of incontrovertable truth that the tick bite had occurred and done damage. It was proof of infection, proof that something wrong was left behind, something visible on the skin.

In November, I became suddenly and drastically worse. The light- and sound-sensitivity and headaches became all-consuming. The musculoskeletal pain was unendurable. I developed neurologic symptoms, including intermittent vocal-cord apraxia (inability to speak) and functional paralysis in my arms — and more often — my legs, severely compromised cognition, and behavioral and mood changes.

I was so weak that I couldn’t leave my bed and had to use my powerchair to get to the bathroom. I needed help to brush my teeth, eat or drink, get in or out of bed. I had trouble breathing and eating; I lost thirty pounds.

I started searching for a doctor who could help. None seemed able to intervene because none of them were convinced, entirely, that my illness was caused by Lyme. Why? Because all of my Lyme tests were negative. I soon learned that this was meaningless; Lyme tests are notoriously inaccurate for producing false negatives. I was tested over and over for multiple tick-borne diseases by multiple doctors as I started seeking more answers. All bloodwork returned “inconclusive” or negative.

However, the CDC officially states that blood tests are not to be used as primary diagnostic tools for Lyme. The IDSA and CDC both say that the presence of an EM rash is 100-percent proof of Lyme infection, and that treatment of patients with EMs should begin immediately; blood tests in such cases are optional.

That’s what they say. Officially. However, none of the doctors seemed to know this. . . .

“Lyme Can’t Cause This.”

I was desperately ill and scared. My friends and family were afraid that I was dying. Yet nobody could come up with a diagnosis. Physical exams and blood tests showed abnormalities, but nothing gave a conclusive answer as to the why.

The only thing we knew that had been added to the mix was Lyme disease, and that was now being dismissed because (1) all my blood tests for Lyme were interpreted as negative (despite that all my lab results say right on them that the test is not conclusive and that clinical evidence must be taken into account), and (2) my doctors were as uninformed about Lyme disease as I’d been.

“Lyme can’t do THIS,” I heard again and again, as each doctor rushed me out of his or her office. Most knew something physical was truly wrong, yet I still heard suggestions for psychiatrists. Doctors who had known me for years treated me like a scary stranger. I was told to find out what was wrong and then come back. Some refused to see me altogether.

Yes, I had had Lyme, the doctors agreed, that was not in dispute, but since I’d been treated for it (actually, according to IDSA standards, I’d been overtreated for it), it could not possibly be the cause of my myriad symptoms. My Lyme was cured. So, all of this suffering and blatant physical dysfunction that occurred immediately following infection was just a coincidence. Besides, everyone knew Lyme just caused some joint pain, headaches, Bell’s palsy, etc. It didn’t make you unable to speak or lift your foot. It didn’t create such agonizing pain that it literally immobilized you. It didn’t destroy your life, like whatever this was.

Thus, in February 2008, my Lyme doctor stopped treating me. She knew I was sick, but without a positive test result, she said she couldn’t “justify” continuing to prescribe antibiotics. I didn’t know at the time that doctors who treated patients with Lyme beyond the IDSA’s “guidelines” were in danger of losing their licenses, losing insurance coverage, and even criminal prosecution. I just knew I was being abandoned.

I spent nine months without treatment, unable to talk, stand, feed, toilet, or bathe myself. I was in excruciating pain, nauseous, dizzy, and couldn’t tolerate any sound, movement, touch, or light. I had migraines around the clock. I had psychological symptoms I’d never had before, altering my personality, and causing me to lose most of my friends.

During this time, not knowing what else to think, I eventually began to believe the doctors. They said this wasn’t Lyme, therefore it must not be Lyme. I didn’t know what it was. I just was holding on for dear life.

I had one friend who had gotten Lyme around the same time as I had. Luckily, her test results had been positive, though she did not remember a tick bite. She was absolutely convinced that my symptoms were caused by Lyme and coinfections. She sent me printouts of Internet Lyme forum posts from other people who’d lost their voices, who couldn’t stand or walk or had tremors, and on and on. She begged me to get retested.

“Positive”

Physically and emotionally, it took everything I had to get retested. In October, 2008, I was again tested for antibodies to the spirochete that causes Lyme, as well as for three other tick-borne diseases. I couldn’t bear the thought of the results coming back stamped, “Negative, negative, negative.” It would be the end of hope. But, I needed someone who was in a position to help me heal to finally know the truth, and this seemed the only way. I had to risk it.

I remember sitting in front of the fax machine, slumped over with exhaustion in my power wheelchair, as page after page came through from the lab.

  • “Western Blot, Borrelia burgdorferi” (the microbe that causes Lyme), “Positive.”
  • “Lyme disease — Confirmed by Southern Dot Blot, Positive.”
  • “Babesia microti” (another tick-borne disease), FISH (a test that shows the presence of the parasites’ RNA in my blood), “Positive.”

As the positive results came through, I cried and cried. Finally, answers. Finally, “evidence” that I wasn’t “crazy.” Over a year-and-a-half after infection, the combination of antibiotics goosing my immune system into producing enough antibodies, and the time that allowed the organism to multiply in my blood and tissues had led to proof: positive blood tests for Lyme and babesia.

Based on these results, my doctor started treating me again. She said she was “thrilled that now she could finally help me.” I can only assume that she had been afraid to risk it before, to risk her practice, because of the politics.

With these two diagnoses came a third — Bartonella. I had almost all of the symptoms, and it is even harder to get an accurate test for this infection than for Lyme. In light of the proof of existing tick-borne disease, my doctor now made a clinical (symptom-based) diagnosis of this third infection. Bartonella seemed particularly likely to be at the root of the psychological symptoms that had cost me my sense of self and most of my support system.

Thus began a grueling treatment regimen, with herx reactions so strong that they usually lasted for several months. Now I am slowly — very slowly — getting better. I’m still not back to how my life was. But I can do more, I suffer less physically, and my personality has been returned to me. I have hope.

“Dubious?” How about “Definitions”?

The IDSA says there is no evidence for chronic Lyme infection that persists after their recommended treatment of 28 days of antibiotics.

My body — my story — provides the evidence that the IDSA is wrong.

Let’s break it down, definition by definition:

  • Evidence: It should be enough for any practitioner to have seen me to know that I was physically ill (and, indeed, that’s what they saw and various blood tests and exams showed), but since clinical common sense was not enough, let’s look at the evidence that takes the human factor out of the equation. We have my EM, at the site of a tick bite. That’s evidence that the CDC and IDSA don’t even dispute. We have the multiple blood-test results that show that one-and-a-half years after infection, the microbes and antibodies were still in my blood. Evidence? Check.
  • Chronic: Chronic disease refers to a persistent and lasting medical condition. In some cases, I’ve seen cut-offs of months or years used to define chronic. Six months is sometimes used, or a year. I had positive test results of infection twenty months after exposure. Three-and-a-half years later, I’m still sick. Chronic? Check.
  • Infection: Here’s a good definition of infection. “The pathological state resulting from the invasion of the body by pathogenic microorganisms.” Borrelia burgdorferi, “the Lyme bug,” is a bacterium in the spirochete family, similar to the microorganism that causes syphilis. Babesia microti is a parasite that causes babesiosis, similar to the parasite that causes malaria. Infection? Check.
  • Persistence of illness after IDSA’s protocol has been performed: I was on amoxicillin from July 2007 through October 2007 and cefuroxime from October 2007 through February 2008. That’s a lot more than 28 days. Yet, as is clear from the evidence of chronic infection above, I was still sick. Persistence? Check.

So much for my easily curable, noncontroversial illness. That’s the IDSA Lyme disease, not my Lyme disease.

I sure wish the gap between the two wasn’t so wide. I sure wish my illness had been quickly and easily curable.

If the IDSA’s picture of Lyme matched the reality of it, that tick bite would have faded, along with my rash, to a distant memory.

If that had been the case, not only wouldn’t I have had to suffer the physical damages of this illness, I wouldn’t have to write a blog to counteract misinformation claiming that my experience doesn’t count, and that my disease doesn’t exist.

Thank you for reading.

-Sharon, the muse of Gadget (who also had Lyme, and who also required treatment much longer than he was “supposed to” have), the spirit of Jersey (who seems to have escaped the plague), and Barnum, who gets tick-checked every night from March through November and has had over 60 deer ticks found on him in his first year alone in rural Massachusetts

P.S. Please support this effort. Comments are very welcome. I also encourage you to visit the following other bloggers who say “My Lyme Disease Is Not the IDSA Lyme Disease.”

I believe Ashley spearheaded this effort; she is a fierce and eloquent advocate for Lymies. Some of the other bloggers also have MCS, like me. Candice is one with severe MCS and food allergies, and a moving story. Heather’s tale is one of the most compelling I’ve ever read, on any topic; please read it.

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.

QuickPress: Little Miracles

(Shallow) Background

Friday, I took Barnum to the vet for some blood work. When we arrived, he ran around inside the van, whining with excitement. (Anytime we go anywhere, he’s thrilled.) I probably should have taken steps to attempt to calm him, but I was negotiating for the reasonable accommodation of having Barnum’s blood draw in the van, since I can’t go inside the clinic. (I have a cargo van, not a minivan, so there is a big, empty space inside. It’s not like I was asking them to do the blood draw in the parking lot or inside a regular little car.) I doubt I could have gotten him relaxed and focused enough to accept food treats, anyway.

Barnum was fine when the first vet tech came to the van. When the second one  joined us, he freaked out. Don’t know why. He allowed us to hold him only because I’ve taught him, “Hugs!” for restraint, and I was doing most of the holding. But he was really anxious (and thus, uncooperative)!

I thought, “Am I living in a dream world to think this dog will ever be a service dog? I can’t even get him to focus on me at all or take his favorite treats (chicken feet!) if we are outside our yard!”

I still haven’t managed to do much about getting my (outdoor) powerchair mobile again, but I thought since I was already bundled up for cold weather, Barnum already had his “Easy Walk” harness on, and I didn’t have a personal care assistant (PCA) physically capable of walking him, I would try to take him for a short walk in my “indoor” power wheelchair. It actually went pretty well, and I was thinking, “This wasn’t as hard on me as I expected. Why aren’t I doing this every day?”

Little Miracles

1. By late that night, I had barely eaten that day, was exhausted, shaky, weak, and had a headache rolling in. I was two hours late in starting my infusion. I’d forgotten to ask my PCA to set up my electric menorah (which I love), on my window sill. Barnum, fortunately, seemed to be conked out.

I wobbled over to my menorah, plugged it in, and sat on the edge of my bed, singing the first blessing, which is the blessing over the candles. I turned on the candles for the third night. Despite feeling physically crappy, the warm glow of the lights and the familiar blessings washed over me, relaxing me, imparting a sense of well-being.

As I was singing the second blessing, thanking G-d for miracles, Barnum suddenly bounced up from his crate. He wiggled over to me, his stump of a tail wagging as fast as possible, and turned circles around me, bopping into my legs.

This is how I interpreted his body language: “I’m so happy! I love you! I like it when you sing! Pet me, and pay attention to me, and love me up! Aren’t I fabulous?”

Yes, fabulous — I had to agree with him. I still felt like crap, but I didn’t mind. I had that “everything will be okay” feeling. It takes a lot of work to be utterly miserable when there’s someone wagging his whole body at you, radiating joy and sheer pleasure in being in your presence. I slogged my way through infusing, heating up the food my PCA had prepped, and treated Barnum and myself to a round of nose-touching a variety of objects. This is a building block to the trained retrieve in Sue Ailsby’s Training Levels, and it’s a skill that Barnum enjoys and is good at.

Overall feeling for the night: Good dog! Good medicine.

2. Of course, healing for the soul only does so much towards healing for the body. In this case, not a hell of a lot, as it turned out.

I went to sleep at 5 AM, even though I’d been wishing since 8 PM that I was asleep. Three hours later, at 8:00 AM, I woke up because I had to pee. (I have to pee very frequently. This is true for everyone I know with CFIDS/ME.) I was in severe pain and very weak. Partway through peeing, I had to stop to vomit. Not a great start to the day.

The rest of the day wasn’t any better. Although it was not as bad as a stuck day, it was pretty close. I couldn’t speak, and I couldn’t move much beyond minor hand/arm movements, such as typing while laying down in bed. I was in a lot of pain. The best part was that I slept most of the day.

My evening PCA came to feed me and help me attend to basic personal care needs. I have a “doorbell button” that I use to call my PCAs from another room. As I’ve mentioned in previous posts, one of the worst functional losses for me due to Gadget’s death has been that I can’t send him to get someone for me, and this button is my main “replacement” for this help.

For example, last night, my PCA helped me transfer out of bed to my chair, and then from my chair to the toilet. I brought the doorbell button with me to call her when I was ready to do the process in reverse, which we did. When I was back in bed, she went to the kitchen to continue working. At some point thereafter, I realized I needed her. I looked for the button. I’d left it on the footrest of my powerchair, out of reach.

I tried using my reacher/grabber against my chair’s joystick to move it around enough that I could grab the button. No good. Too far, and the wrong angle. I tried beeping my chair’s horn, but it’s pathetically quiet, and not surprisingly, my PCA never heard it.

“Well,” I thought. “Barnum and I have been working on cues for barking and shushing, so maybe I can get her attention with some barks.”

I had my doubts because (a) Barnum barks for fun, still — at his toys, at his reflection in the glass doors, etc., so I figured she’d probably ignore him, and (b) Barnum and I had never practiced “Bark!” with only the hand signal (ASL for “speak”), nor with me in bed.

I got his attention and gave the cue for “bark,” and out came a very nice, distinct, sharp bark! I clicked and treated, and we did it several more times. Sometimes they were more like whines, as barking on cue is a different ball of wax than doing it as the urge strikes, but occasionally I’d hold off clicking, and he’d work his way into a loud, strong bark.

Did this bring my PCA running to check on me? No. I did eventually manage to get her attention another way (see below). The barking had not raised suspicion because she assumed he was just barking at his knuckle-bone or something. However, I was then able to tell her, “In the future, if you hear him barking repeatedly when I am alone with him, please come check on me.” I plan to tell all my PCAs this, and . . . voila! A service skill is born! (Or, is gestating. I still need to extinguish his other barking behavior, and we need more practice to get many strong, clear barks in a row as an “attention bark,” but it’s a very strong beginning! And he loves it!)

Good dog!

3. When the barking failed to work, I once again tried to reach the doorbell button with the reacher. Barnum now was “in the game” for clicker training. When he saw me fiddling with the stick, trying to manipulate the button to lift it (and utterly failing), he naturally became interested in this thing. After all, it could be a toy that needed demolishing!

He reached for it, and I made encouraging, happy noises. I thought I might be able to get him to drop it closer to me (he does not yet know a formal retrieve, but he will play fetch sometimes), or he might chew on it and accidentally press the button.

What happened was, as I held my breath and watched, he reached down and touched the button with his nose! I heard the “ding-dong” of the bell in the kitchen. Good dog! I clicked and treated and made lots of happy sounds and invited him onto the bed for petting.

Do I think Barnum knew what I was trying to do, and jumped in, Lassie-like, to save me?

No, I don’t. We have been doing lots of nose-touch training lately as a step in teaching a trained retrieve, and that has meant me holding up every conceivable object for him to nose target. Therefore, it’s possible he was nose-touching the button to see if it would earn him a c/t.

However, I think that’s unlikely, too, as he has not yet learned to touch things on the ground. In fact, the cue for nose targeting at this stage is just my holding an object in front of him.

The most likely explanation is that he was curious. He is still on the mouthy side — liking to explore things with his snout and mouth — and he saw me messing with a strange new object and decided to see what he could learn about it. In doing so, he probably accidentally pressed the button.

But I don’t care! The result is that I needed to call my PCA, and Barnum did it! Curiosity is good, because it’s part of the desire to learn and test out new behaviors that is such a part of clicker training a service dog. In fact, his outgoing, curious nature was a major reason Barnum’s breeder chose him as the best SD candidate.

Another important aspect of the behavior is that once I c/t him for touching the button, he stopped nosing it, and I was able to get him to focus elsewhere so that he didn’t decide to chew, stomp, or otherwise maul it. We are learning to communicate, and it’s a beautiful thing.

Will he ever be an “all-around service dog” who has the manners, focus, and obedience required for public access? I have no idea. Nevertheless, I am gaining confidence in us as a working team. I feel more and more that he will be able to help me out at home, to be an assistance dog to me in the house. Since I spend over 98 percent of my time at home, that is a really big deal.

 

Barnum age 11 months

I'm the shit!

Good dog!

Happy Hanukkah!

-Sharon, the muse of Gadget, and Barnum (“The Nose”)


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