Blogging Break Due to RSI

You’ve probably noticed I haven’t been blogging much lately. Now I’m also barely emailing, tweeting, or otherwise using the computer when not absolutely necessary.

I’ve developed pain and swelling in all the joints of my arms, especially my right hand and wrist. Just a couple of minutes mousing or typing — even with an improved ergonomic set-up — immediately flares my symptoms.

As I rely on the computer for communicating when my voice doesn’t work — I’ve been using it as an assistive communication device for years with my PCAs — as well as for all my work, information, recreation, and most of my social life, it’s really important to me not to lose access to the computer completely. Also, now that I’m having RSI symptoms even when I haven’t touched the mouse or keyboard for hours, I’m quite scared about developing a new disability and set of limitations.

I’m making an appointment with a hand specialist and have ordered a new mouse and keyboard. Meanwhile, I plan to rest my hands as much as I can stand without going out of my mind from boredom and computer withdrawal.

Other things are in the works, which I hope to get to when my upper extremities are doing better. I have even penned my first blog post by hand (a book review for my other blog), which I hope someone else will be typing for me.

Ciao for now, brown cows.
-Sharon, the muse of Gadget, and Barnum, SD/hindrance dog

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

Barnum’s Current Job: “Furnace”

Here in rural New England (and I hear, in some of the cities, too), we got whomped by a big snow storm Saturday night. We’re not used to getting one-and-a-half or two feet of very wet, heavy snow in October. That’s a bit much! A lot of trees came down, and with them, the electric and phone lines.

We lost phone and power (which means heat, water, and electric) Saturday night. We have a generator now, but yesterday Betsy tried to get gas, and the roads were impassable due to trees being down everywhere, so we didn’t hook up the generator (and seal off the part of the house next to it, so I don’t get gas fumes) till tonight. We have five hours of generator use tonight. That is how I am able to use the computer and internet. We also have a heater. We need to shut it off in about an hour-and-a-half. We got phone service back this evening, which was thrilling.

I’ve blogged before about the ice storm of December 2008, and how traumatic that was for me. This time it’s much less traumatic because we were much more prepared. I also have more help this time, and Betsy’s here, and I am not unable to move or speak, like last time. There have been some moments of fear and sadness and anxiety, but overall, it’s been not too bad.

Barnum has been great! Gadget was never much of a snuggler, but Barnum prefers to spend most of his time hogging my bed. That works well when I am looking for body heat. He is a little furnace! I have particularly been able to put into action the skill I taught for him pressing up against me and laying his head on me. I taught that to help me when I’m feeling agitated, but it turns out it works well for maximizing body heat, too.

He is, however, extremely bored. We haven’t been able to do much training, and he hasn’t been getting as many walks as usual. When I let him outside, he gets the zoomies, and races around and around the yard. When we do train, he is extremely eager!

This has interrupted my ability to keep track of, and do activism for, the 99-percent movement. However, I’ll do what I can when life returns to (more) normal again.

Hope you all are well.

– Sharon, Gadget (I did not like being on furnace duty!), and Barnum, SDiT and producer of body heat

Happy New Year!

Tonight (Wednesday night), is the first night of the Jewish New Year, Rosh Hashana. I’m actually doing something for Rosh Hashana, which is a big deal. It’s the first time in a long time that I’ve done anything for a holiday, and it’s been even longer since I’ve done anything I felt good about for a holiday, especially a Jewish holiday. Especially one of the High Holy Days.

I’m getting together, by phone, with some of my friends and fellow students from my Nonviolent Communication (NVC) class. I’ve pulled together some poems and some ideas of things to discuss, and sent out a transliteration of the shechianu (in both the masculine and feminine). I’m actually looking forward to it!

It’s really nice to have this glimmer of joy. I appreciate that even though I’ve been so sick lately and experiencing so much grief (this is a hard time of year for me — a lot of bad things happened to me in October through December), I can still find some happiness and a sense of meaning.

If you want to read some of the wonderful poems we’ll be using for our gathering, here they are:

• Marge Piercy’s poem on tashlich, “Breadcrumbs” (unfortunately missing some line breaks)
• Marge Piercy’s poem, “Head of the Year” (the literal translation of “Rosh Hashana), also unfortunately with incorrect linebreaks
• “Untitled” by Judy Chicago (which should just be one stanza, without all those extra line breaks)
• “Untie” by Rabbi Sheila Peltz Weinberg
• “From Blossoms” by Li-Young Lee

A sweet New Year to all.

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

 

Good, Clean Fun: Compulsion-Free Bath

I’ve written before about how I train my dogs to enjoy baths. I used treats, including “bobbing for biscuits” to make baths more enjoyable. With training, both Jersey and Gadget were accustomed to get in the shower with me and even to help with the rinsing aspect of the job by lying down in the water.

They both had frequent baths because any time we went somewhere that involved a chemical exposure — to a store, a doctor’s appointment, or anywhere we were around people — it was necessary for me to shower and change my clothes when I got home, and to bathe my dog, as well. The chemical residues in their hair was no more tolerable for me than those on my own skin, hair, or clothing.

However, I must admit that Jersey and Gadget didn’t so much enjoy baths as put up with them. They enjoyed the treats that I used to make bath time more pleasant, but they still didn’t relish the overall experience. And while there was no struggle and physical force involved, there was an element of psychological compulsion. They were not offering behaviors; they were complying with cues because they knew there really was no other option.

Until today, I thought that bathing Barnum was always going to be more difficult and unpleasant than training Jersey or Gadget. Barnum is not one to submit just because I am the human and I say so. He had several baths when he was a little puppy, and they were far from fun and relaxing for anyone involved. The problem was that we did not have the opportunity to build up slowly and positively to happy bath experiences.

Barnum had been shampooed repeatedly, and recently, with scented dog shampoo before we brought him home. The fragrance chemicals made me very sick, so we had to wash him often. Further, because I was doing my best to “super-socialize” him in his first 16 weeks of life, he went to a lot of smelly places (including puppy kindergarten) that required post-adventure scrub-downs.

Barnum recovers from his first bath after his looong trip.

[Photo description: Barnum as a tiny puppy, at eight-and-a-half weeks old, still damp from his first bath. He sits at the entrance to his crate, looking a little dazed. He is black with ringlets of fur, with the characteristic big paws and slightly cloudy eyes of a young puppy. Sharon’s hand is in front of his mouth, feeding him a morsel. Her hand is almost as big as his head!]

It took months of bathing to get the scented shampoo out of his coat. In fact, it was not until we gave him his first severe haircut and cut off all the hair that had absorbed the scented stuff that I could put my face to his without sore throats, headaches, coughing, and my face turning beet-red.

Inevitably, these baths were stressful affairs. I was being made sick by the increased offgassing of the fumes when his hair got wet. I had to wear gloves and a carbon filter mask during the process, and we tried to make it as quick as possible. I tried to bribe and/or sooth him with treats, but he was having none of it. He didn’t want cheese or hot dogs or broccoli, he wanted out. Barnum was completely pissed off about being bathed against his will, and he kicked, flailed, scratched, and shrieked the whole time.

So, that was the background I had to work with to train Barnum that baths were actually terrific fun. I doubted I’d ever succeed. Between the numerous negative experiences I had to counteract and the fact that we didn’t get a lot of bathing practice, I thought we were at a severe disadvantage.

I was wrong. The fact that Barnum had few baths while I’ve been training him to enjoy being in the tub has meant that I wasn’t working against myself.

I mentioned in one of my “toilet training” posts that I started with tossing treats into the tub whenever Barnum followed me into the bathroom. The first unexpected hurdle was, well, literally a hurdle: Barnum couldn’t figure out how to jump in the tub.

He used to know how to jump in the tub, so I think it was more of a “mental block” than anything — an approach/avoidance conflict. He wanted the treats in the tub, but he was anxious about being in the tub. I spent a couple of weeks — many, many sessions — simply shaping him to jump in the tub: one paw on, two paws on, hind foot raised, etc. Finally, he learned to jump in the tub, and I clicked/treated for jumping in and out, attaching the cues to the behaviors as we went.

I faded the c/t from jumping out pretty quickly and focused on c/t for being in the tub. I treated it mostly like the shaping exercise for “Go to Mat” in Sue Ailsby’s Training Levels. I lured the beginning of a sit, and from there, shaped for sitting and then lying down. Over time I shaped for longer periods of lying down and for relaxed body posture while lying down.

Sometimes, instead of clicking (operant conditioning), I used classical conditioning — just tossing treats between his paws while he was lying down so he could stay relaxed and simply associate being in the tub with happy things. Eventually, whenever I went into that bathroom, he’d jump in the tub and wait to be clicked. Soon, he began offering behaviors: Being in the tub not good enough? What if I sit? What if I down?

Once he was truly relaxed lying in the tub for extended periods, I started adding elements that he’d associate with baths, such as the ventilation fan being on, grabbing the hose (hand-held shower), opening and shutting the drain, rubbing him all over with my hand (but no soap or water) to mimic being shampooed, and moving the shower head over his body (without the water turned on).

These environmental cues were mostly visual, auditory, or tactile — my body position as I leaned over him to rub him; the sound of the metal shower hose clanging against the fiberglass tub, etc. I clicked for staying in position and staying relaxed, and also continued to toss treats without clicking just to add classical conditioning to the mix. Also, sometimes it was too hard to perform this physically exhausting maneuvers and also time my clicks properly, so it was easier just to toss treats or use a verbal marker.

Finally, I started adding water. The way I’d want to add water — and the way I’d suggest to anyone else — is to let a tiny dribble into the tub of lukewarm water. Unfortunately, my faucet is very strange. It’s a knob, and you adjust the temperature by how far you turn it (turn it a little, and the water is cold; turn it all the way, and it’s scorching). But, unless you want very cold water, there is no way to start with a trickle, then work up to a stream, then full-blast. Since ice-cold water can be quite aversive, this was a challenge to train.

So, I would turn the knob just enough for the sound of water to start, and turn it off again before any water actually hit the tub. Or sometimes, after it was off, a dribble would come in. It took several sessions for Barnum to stay truly relaxed at the sound of the water starting.

Eventually, I was able to get water going in the hose and spray it at the drain, so it wasn’t hitting him, and he was okay with that. But we had not yet gotten to the point where he would stay, relaxed in the tub, lying down, beyond his front paws getting wet. I thought we still had a long way to go.

This is a dog who refuses to walk through puddles. He likes to drink water from the garden hose, and he will run into the pond and moving streams, but he really does not like to get his feet wet unless it’s part of some fun activity. Even on scorching-hot days, he refuses to wade in the kiddie pool in the yard.

Then, a few days ago, Betsy and I were tick-checking Barnum, and we saw something we thought might be a flea running through his hair. We didn’t find any evidence of flea bites or flea dirt, but we decided we better bathe him, just to be on the safe side. Also, he really needed a bath.

I got together the treats and went and sat in the bathroom. Even though I’d tried so hard to simulate all the “forerunners to bath” cues in our training — getting the dog shampoo, turning on the fan, taking off my pants, etc., Barnum knew it was bath time! I was surprised. He is so sensitive to environmental cues; he’s really quite a genius at it.

But I just stayed calm and ignored him, and eventually he decided, “Hey, maybe this is a training session!” So he hopped into the tub! I said the cue while he was in the air, clicked and treated when he was in the tub, and we did a few more cued “in-and-outs.”

He sat, he downed, I kept c/t (I actually was using a verbal marker — not enough hands to hold a clicker) for the things we usually did. I stoppered the tub, I turned on the water, pointing the spray away from him. He stayed in the tub!

“Well,” I thought, “I’ll just see how far I can take this until Betsy gets here to help.”

I started spraying his lower legs, figuring that would be less likely to trigger a jump out of the tub than if I went for his back or butt or head. He stayed in the tub, eagerly participating in this “training session.” Soon, I had all of his legs, including feet, sprayed down and was moving up to his belly.

I yelled for Betsy and she came in. “He doesn’t know it’s a bath!” I told her. “He thinks this is a training session! Don’t let on that it’s a bath!”

We did the entire bath without any holding, demanding, gripping, or body blocking! He was smiling and enjoying himself. It was completely unlike any other dog bathing experience I’ve had. There were two times he decided the training session was going in a way he didn’t like, and he jumped out (soaking the floor). We just waited.

He paced and dithered. He wanted to keep getting the treats! He wanted the training to continue, but now the tub was half-full of water. Yet, training won out, and he — on his own — jumped back into the water. This happened twice! I did not touch him or cue him until he had already decided he wanted back in.

It was the fastest bath we’ve ever done! The most remarkable part of it, for me, was observing his body language. His tail was up and sometimes gently wagging. His head was up. His mouth was relaxed and smiley. His eyes were sparkling. He did not have that slumped, defeated look I have come to associate with any dog in a tub. He actually started playing in the water near the end — scratching at the tub drain (which I discouraged) and bobbing for treats, sticking his nose under the stream of water.

One of the youtube channels I subscribe to is MultiAnimalCrackers. She clicker trains her own dogs, horses, donkeys, and other animals. She says all the animals are trained “at liberty,” which means that they offer behaviors willingly; they are never forced to do a behavior they don’t want to. Bathing Barnum “at liberty,” though it did mean a soaking-wet floor from the two times he jumped out and we had to wait for him to decide to jump back in, was a remarkable experience.

I’ll post a photo essay separately of Barnum in the bathtub, just for kicks.

It’s only been a decade. I think I’m starting to get this clicker training thing now.

Give me liberty, or and give me bath!

– Sharon, the muse of Gadget (mooo!), and Barnum, sparkling clean SDiT

P.S. I am a finalist in today’s 5 Minute Fiction challenge again. I told you I was addicted! It’s a great group of finalist stories this time. I like them all. Please read, enjoy, and vote! (Preferably for me, but whichever one you like best, really.)

Video: Pivot Left with Wheelchair

Barnum and I have been making tremendous progress in his training. All of a sudden, his learning has accelerated, and several skills are coming together. It’s very exciting.

One of the challenges we’ve had all along is keeping him in position when I turn left.* He generally works/walks on my left, so when I turn left, I am turning into him. His (very natural) response has been to backup — to avoid getting hit — and wait until I am perpendicular to him, when he will then step forward until he is eventually parallel to me again.

The problem is that I don’t want him perpendicular to me at all, ever, unless I have specifically cued that behavior. I want my service dog parallel to me, at my side, for several reasons:

1. When he’s wearing a pack with items I want to access, it will be easiest to do so if he is at my side.
2. Service dogs should be as unobtrusive as possible. We already take up a lot of space because I am a large person in a large powerchair with an oxygen holder on the back, and he is a big dog. When we add the pack, we’ll take up even more space. If his butt is sticking out, we’ll take up unnecessary room.
3. He is most likely to get bumped into by a person or shopping cart or other things, or to back up, himself, into store displays, people, or other objects if he is not lined up next to me, where I can better protect him and shield him with my body/chair.

I didn’t have a problem teaching Jersey or Gadget to turn left, because with both of them I started with a four-wheeled mobility scooter. It had a very long base — as long as they were. So, when turning left, they were forced to stay parallel to me; there was nowhere else to go. Turning right was trickier — that is when they usually swung wide. I taught them right turns by using natural barriers — walls — and making right turns with the dog between me and the wall.

When I switched from a scooter to a powerchair with Gadget, he already knew how to move correctly with me, and it was never a problem to apply what he knew of walking with a scooter to walking with a chair. I didn’t have to do any retraining.

I’ve tried using natural barriers with Barnum to teach left turns, but there really aren’t many available. There are no accessible outdoor structures (like the garage I used to teach Jersey and Gadget, when I lived elsewhere), and in my home, there are very few walls or pieces of furniture that provide enough room for making turns.

I came up with a new way. I used the method that many trainers use for teaching hind-end awareness or for heeling training — having the dog place their front paws on a thick book or low stool, and then clicking them for taking steps with their hind legs. Eventually, they learn to pivot.

Barnum and I have been doing this pivot training for a few months, though not very frequently. Since one of the first shaped skills I taught him was to scratch his nails on a filing board, it took a while to extinguish scratching the book. Another issue we had to contend with is my problem with spatial awareness and cognitive mapping.

I’ve never had a good sense of direction, and the multiple insults to my brain from chemical injury and neurological pathogens hasn’t helped matters any. There are several posts I want to write about how brain injury affects my life, especially my two most important and beloved activities — dog training and writing — and this is one example. Before Barnum and I did a session, I had to cue him to walk with me in his “service dog walk” to figure out which way his butt should swing. I’d find a landmark in the room and circle my finger again and again in the direction I wanted his butt to spin in relation to that landmark. I didn’t want to accidentally shape him to spin right! Sometimes I just wasn’t mentally with-it enough to train this behavior.

Even after I’d captured and reinforced hind-foot steps to the left, he was pivoting without any seeming awareness that he was, or that that was what he was being clicked for. I think he has just recently become aware that his hind-end movement is what earns the treats.

The video below (which has no sound, except clicking, so it is not captioned), shows how the skill is now coming together. First I give him a few practice clicks spinning on the book, and then I slowly join him in the exercise, trying to click for him moving his hind feet when I move my chair — or even just to catch up and put himself parallel to my chair.

We still have a ways to go. The pivoting is not a default yet, but he’s incorporating the movement more often when we do “working walk” than he used to.

For those who are wondering about a cue — I did not attach a cue to this behavior. The cue will simply be my chair turning left.

– Sharon, the muse of Gadget, and Barnum (left, left, left, right left) SDiT

* This discussion pertains to “working walk” or “service dog walk,” not just simple loose-leash walking. If we are going for a casual walk, for recreation, he doesn’t have to stay in position. What I call “working walk” requires Barnum to be at my side, parallel, and giving me brief eye contact at least every three seconds, but usually more like every other second at minimum while moving, and more sustained eye contact when we’re stationary. Most people would think of what we’re doing as “heel,” as I used to. However, “heel” is actually a precision drill-team-like movement, used for obedience competitions. There aren’t many real-world applications to “heel,” especially because it can’t be maintained for long periods; it’s too demanding.

Lyme Myths: “Not a Problem Here”

I  have not been able to do much blogging lately (you might have noticed). Here’s some exciting news though:

1. Barnum is consistently and speedily peeing on cue in his usual toileting area. Now I just have to start slooooowly moving him away from it so he can generalize the cue. But even more exciting (I know, you didn’t think it was possible), is that last night he pooped on cue! Yes!

2. I have been using a lot of the energy that I normally use for blogging or training Barnum to do “creative writing,” which I also hope will be paid writing. It’s been thrilling to discover I still know how to discover characters and tell a story. I feel like I am finding “me” again.

Okay, you all know I tend to ramble if given the chance, so I’m going to try to do some short posts on Lyme- and tick-related myths and facts, because I come across those a lot.

Also, aside from regular readers, the most traffic to this site is from people who have used a search engine to look up information on ticks, often related to dogs, deer ticks, or Lyme disease. For this reason, I have set up a permanent resource page called, Did You Get Here by Searching “Ticks”? Lyme & Related Info.

It has links and a brief description for all the Lyme-informative posts I’ve done (currently divided into posts on ticks and canine Lyme; treatment and living with Lyme; and PICC line/infusion).

I will try to put a button for it on the home page so it’s easy for people to find. I’ll add links for new posts as they arise. (For example, this one!)

Today’s myth is that there are areas of the country (or the world) where you and your dog don’t have to worry about Lyme disease. Sadly, this is not the case.

I think I unintentionally contributed to this idea when I included a map of the United States in one of last year’s Lyme awareness posts. It showed where the heaviest concentration of Lyme-carrying ticks were at the time the survey was done. (Important note: Each year, more cases of Lyme spread into areas where it was previously rare.)

I was hoping people would see the map, and along with the fact that I said, “Lyme is everwhere,” in that post, understand that it’s very severe in some areas, but no area is “safe.”

Instead, I think people tend to look at the darkest concentration of dots and think, “Phew! Glad I don’t live there!”

In fact, I have heard from people comments such as these:

• “I’m so glad I don’t live where you do. I couldn’t deal with Lyme.”
• “I got the Lyme vaccine for my dog when we visited in [state].”
• “We don’t have a lot of ticks/Lyme here.”

I’m not going to say that everywhere has the same level of risk, because right now, where I live is one of the worst places for ticks and Lyme, and you may not live in one of the most prevalent Lyme locales.

Nonetheless, you don’t need to be overrun with ticks for Lyme to be an issue: It only takes one tick. One bite.

And whether you see or feel them or not, there are ticks and Lyme everywhere.

Literally.

Here are some examples.

Think cities are low-tick zones? I know people with Lyme disease who contracted it in New York City (not known for its woodlands) and Somerville, Mass., the most densely populated city in New England. The Somervillian picked up the tick from a shrub in her yard. The “yards” in Somerville are mostly concrete.

What about cold climates? I know people with Lyme in Alaska. Maine, where Lyme used to be rare, is now epidemic. I have a lot of friends in Maine, and it’s alarming  how many of them have gotten Lyme in the past two years.

Think you’re safe in the desert? I know people who have gotten Lyme in Texas and Arizona.

If you think there isn’t Lyme in your state or your area, sadly, you’re wrong. Feel free to quiz me — tell me where you live. I’ll tell you the Lymies I know in that area.

Not just every US state, either. I know people with Lyme in France, the UK, Canada, Australia, New Zealand, etc.

The disturbing part of this is that the people who are supposed to be tracking the statistics are not always reliable. Therefore, the information you get about prevalence is unreliable.

For example, I know someone in Pennsylvania who got a Lyme test result (more on Lyme tests in a future post) that was positive under CDC criteria, which is the strictest there is. He called the state department of health — which doctors are supposed to contact to report any case of Lyme or other serious infectious disease — and the person he spoke to at that agency asked him not to report it. They said they didn’t want statistics showing that there is Lyme in Pennsylvania.

I don’t write these posts to scare or overwhelm you or impose a sense of helplessness. On the contrary, I want you to know the truth for the following reasons:

1. You will take more steps to protect yourself,  including tick checks of yourself and animals (how-to coming up soon);
2. You will be more likely to suspect Lyme if you or your dog gets sick with something that can’t be diagnosed — and therefore, get it diagnosed and be more likely to treat it swiftly and aggressively, which is your best defense against acute Lyme becoming chronic Lyme;
3. You will consider, if you have one of the many diseases that Lyme often mimics, getting yourself evaluated for Lyme (more on this in a future post, too).

A final note. Here’s what scares me when I hear comments that suggest a lack of concern over Lyme in a particular area — it reminds me of the early years of the AIDS epidemic.

When AIDS first struck in the US, the primary patients were gay men, then IV drug users, then hemophiliacs. This led people who were not (or did not identify as) gay men, intravenous drug users, or hemophiliacs to believe they were safe.

Word started getting out in the communities of people who engaged in high-risk behavior about how to reduce those risk.  Using condoms, using clean needles, and a change in how the blood supply was monitored led to a leveling off and then decrease in the incidence of  new cases among these groups.

However, a lot of people still thought of AIDS as belonging to “the others,” as belonging to a group or class of people, as opposed to it being a disease that was passed by a virus found in various bodily fluids — bodily fluids we all have or can come into contact with. As a result, a lot of people who could have taken precautions to prevent getting HIV did not. This led to a tremendous rise in HIV among heterosexuals, and an epidemic among urban women of color, in particular.

Hopefully you all know that AIDS is not a “gay disease” or a “druggie disease.” Likewise, Lyme is not a “New England disease.”

Lyme disease does not belong to “the Northeast.” It isn’t only a risk “in the woods.” It isn’t about having deer in your area (a future post on the misconception that deer are the main carriers of Lyme disease).

Lyme is a risk anywhere there are ticks, and there are ticks anywhere there are hosts. Hosts are anything with blood in their veins (dogs, cats, birds, horses, mice, rats, marsupials, etc.).

Panicking never helps anything, but denial can be deadly. Please, rethink your level, and your dog’s level, of risk, and act on it.

Peace,

Sharon, the muse of Gadget (who suffered with Lyme for a long time due to my ignorance), and Barnum (who is learning to relax and accept tick-checking as a nightly massage)

Waspish Wednesday: Dear Bloggers, About Your Fragrance Posts…

I want to say, upfront, that although I’m writing this as a “Waspish Wednesday” post, I’m working hard not to be waspish (which, for those who missed the post where I defined “waspish,” means irritable or stinging). In fact, this is a complex issue, and both the issue and the bloggers I’m addressing are worthy of respect.

This post is part of my MCS Awareness Month activity (despite that it is now June), and I want to raise awareness in the truest sense — where learning and openness to ideas take place — not where I just say, “You’re oppressing me! Now stop it, and — as for your own feelings — suck it up!” And you respond by shutting down or flaming me or feeling angry or guilty or whatnot.

No, that’s not my goal, because I like my readers and the bloggers to whom this is addressed. I don’t want to contribute to your pain in an effort to alleviate my own. I want to be heard, and to know that my needs (and the needs of others with MCS) matter to you, while also recognizing you have needs, as well.

Mostly, I’m hoping this opens up a dialogue and that, regardless of the choices you make after reading this, your decisions will be more informed about the potential impact they have on me and others like me. I’m hoping for mutual care and esteem between my fellow bloggers and myself.

Here we go.

I’ll start with some basic definitions and explanations. MCS stands for multiple chemical sensitivity, which is a condition usually caused by chemical injury — either a single, acute exposure, such as a major chemical spill at work or pesticide  exposure at home — or a series of low-level exposures, such as working in a sick building or a beauty parlor or dog grooming facility or getting new furniture and carpeting.

When someone becomes sensitized, an effect called spreading occurs, which means that although the person might have been sensitized by a single chemical or class of chemicals, over time, they become sensitized to more and more classes of chemicals. The great majority of MCSers also develop sensitivities to foods and common allergens, such as mold and dust, and many have electro-magnetic field (EMF) sensitivities, as well.

There are two major distinctions to be aware of when talking about someone with allergies or “some chemical sensitivities” (CS) versus someone with true MCS.

1. Allergies are mediated by the immune system, and are usually limited to certain triggers (such as dust, pollen, dander, certain foods, etc.), and can usually be controlled with antihistamines and/or steroids.
2. Some CS is extremely common. About one-third of the population has adverse reactions to a limited number of chemicals. The most commonly recognized are smoke, fragrances, car exhaust, and the like. This number is on the rise, as is the prevalence of “true” allergies.

MCS, on the other hand, involves adverse reactions to dozens or hundreds of chemicals, affects multiple organ systems, and generally cannot be interrupted with medications or other treatments. Further, the more exposures an individual has to chemical triggers, the sicker they become. (The illness is progressive.)

MCS seems to be mediated primarily by the central nervous system, although any system can be affected (skin, eyes, genito-urinary, respiratory, liver, reproductive, etc.). Reactions can be immediate or  delayed or both; they can last for hours, days, weeks, or months. Therefore, when an MCSer is exposed to a trigger, their reaction is one of being poisoned, often experiencing the symptoms of poisoning that would accompany a massive exposure to that chemical by a “normal” person. An exposure to a trigger for an MCSer is not an allergic reaction; it is a form of systemic poisoning.

This is not to say there are neat, clean divisions between these categories. Most people with MCS have allergies, and a lot of people with allergies have some chemical or food sensitivities.

Sometimes it’s difficult to respond calmly and rationally to an exposure. Partly, this is because usually we can’t think straight, because our brains are affected (which can range from brain fog and confusion to migraines and seizures or loss of consciousness), and partly because we feel as if we have just been assaulted. Which we have been, whether intentional or not; we have just been poisoned.

Further, because almost every place in the world is full of chemicals that make us sick, we are usually extremely isolated. Many people with MCS are restricted to their homes. It is more common than not for MCSers to be homeless at some point, often living in their cars or in tents, because their previously safe home was contaminated or because they cannot find a safe home. Most MCSers do not have any meatspace friends or social interactions, unless it is with someone else who has MCS.

According to the “medical model” of disability, the problem is that the MCSer is sick/chemically injured. According to the social model of disability, the problem is that almost everyone in the world — basically, virtually everyone who does not have MCS — is choosing to use toxic chemicals that keep us confined to our homes.

Understandably, emotions tend to run high on this issue.

The one place where many MCSers have freedom to interact and a social life — if we do not have severe EMF issues — is the internet. On the internet, we can interact with, and become friends with, scores of people — people we would never be able to come within 20 feet of IRL. For me, this brings a sense of freedom and acceptance that I would not have otherwise.

I try very hard to ignore the fact that everyone I interact with online, except for a few other people with severe MCS, are probably making choices every day that limit my life and the lives of other people with MCS. I pretend that they are just like me. Especially if they are also disabled or involved in disability-rights activism.

This doesn’t mean I’m a fool. I know that when I read a post about going shopping or out to eat or to school or work or to visit a friend that those are all things that person can do that I can’t. It twinges a bit, but I’ve gotten used to it.

What is much, much harder to take is when a blogger I follow, and I follow almost exclusively disabled bloggers — usually disability rights bloggers — promotes the use of fragranced products on their blog. Then, I can’t pretend anymore that we could ever meet IRL or that they are truly my allies in a deep way.

That feels painful. And I don’t know what to do with that pain.

It started with a post on FWD/Forward, the feminist disability rights blog, which was my very favorite blog, ever. (Moment of silence to honor FWD; no longer posting, but still a treasure trove of archived info.) The post was entitled Things that Make My Life Easier: Black Phoenix Alchemy Lab.

In a nutshell, the blogger wrote about how using these perfumes helped take her mind off her chronic pain and fatigue. This is a blogger I like (her blog is one of the few I subscribe to), and I relate to a lot in her posts about living with chronic pain. This made the situation all the more confusing and heartachey for me, because I want to feel companionship and sisterhood with my fellow bloggers, especially when they are disability-rights advocates and feminists with chronic illness! These are my peeps!

I was really shocked, therefore, and upset, that a disability-rights blog(ger) was promoting a perfume product. This is not to say that the post was unthinking or unfeeling. For one thing, the blogger was writing about a way she has found to live better with chronic illness:

As a person with chronic pain, I have found that certain things having to do with the five senses that take my mind off of my pain — even for a few minutes — makes dealing with pain and fatigue much, much easier. . . . I have personally benefited from wearing the . . . essential oil blends in which the Lab specializes. . . . [M]any of these blends have helped me to relax, focus on a different sort of physical sensation that is not abjectly, horrendously painful, and generally be more comfortable as I go about my day.

I think that everyone who lives with severe, chronic pain (or even moderate chronic pain or intermittent severe pain) can relate to grabbing hold of anything that will make the pain more bearable, at almost any cost. I’ve had many conversations with others who have multiple disabilities or symptoms, and we all agree that pain is the worst. If I could exchange any of my other symptoms being worse for not being in pain, I would. In a hot second.

(I am, in fact, experiencing escalating pain as I write this, and although I have taken my pain medication, if it doesn’t kick in soon, in a big way, I will have to just lie in bed, doing nothing but trying to focus on anything other than my pain. On the other hand, the fact that I’ve continued writing should tell you how deeply I care about this topic.)

FWD has taken on how difficult it is when disabilities conflict in other posts, which I find rare, and admirable. Most people either are not conscious that such problems exist, or they steer clear of this sticky wicket.

In the essential oils post, too, after going into details  about which are her favorite scents and why, the FWD blogger ends thus:

[T]he very fact that I wear essential oil perfumes brings up another issue — how to be sensitive and accommodating to fellow PWDs who may have scent sensitivities, allergies, or who may have otherwise painful reactions to scented stimuli. When I’m planning to be out and about, I tend to wear a drop or two at most, usually applied with a q-tip, and allow ample time for the oil to dry before I leave the house; this is not a perfect solution, but I am still figuring out how to balance the benefits that I personally get from wearing these amazingly-crafted oils with the needs of other PWDs whom I may encounter in public.

I will get back to the effectiveness of her attempts to make her fragrance use less problematic for people with chemical sensitivities (and others adversely affected by fragrance) further down. But, at least she acknowledges that her usage of fragrance chemicals is problematic for others with disabilities.

What I found strange at the time (before I discovered so many people with Lyme who identify as having MCS but use essential oils) is that almost every comment to this post said something along the lines of, “I have some fragrance sensitivity/chemical sensitivity, and I tolerate these fragrances better than others” or “I tolerate oil-based fragrances better than petroleum-based ones.” More about this further down.

After this post appeared, however, I began seeing many women bloggers with disabilities enthuse about wearing fragrances or essential oils, and particularly this brand of essential oils. I was even invited, in one of the illness social forums of which I’m a member, to join a group on essential oils and aromatherapy! And several of the people in this group — friends of mine, in fact — identify as having MCS or chemical sensitivity. I actually fled that social forum for a while because I just didn’t know how to handle that situation. I still don’t.

That feeling of helplessness and confusion continues to this day. I see my sister disability-rights bloggers promoting scented products, and I just don’t say anything because I am afraid that if I do, they will either be angry and defensive, and I will lose their friendship. Or they will say something that I experience as dismissive of the severe limitations I live with due to MCS (or to the lack of MCS access in the world), and then I will feel alienated and lose their friendship.

There are other reasons I have gone so long and said little or nothing when I see these posts. One is that I can do a certain amount of distancing and justification: I know I’ll never meet these people in person, so their use of these products is not making me sick.

Another is that I have some empathy for the desire, when life is so damn hard and limited, to make use of anything that makes life easier.

However, my silence has consequences. It implies that I condone the purchase and use of scented products, and/or that I concur with the conclusions that using minimal amounts of these scents, using “all natural” (oil- versus petroleum-based) scents, or not wearing scents on the day you know you will  be around someone with MCS ameliorate the harm these products cause.

I’ve reached the point where I’m not comfortable with my silence anymore, because it tastes like a lie. I’ve decided to address those bloggers who want to be allies to me and other people with MCS.

I am not addressing this to the vast majority of bloggers, because they aren’t aware of MCS, and some of them are actively hostile to it. I address it to my fellow bloggers with disabilities who consider themselves disability rights activists and/or my friends, allies, or readers.

Dear disability/chronic illness blogger,

I read your post about how much you love perfume/essential oils. I know you have some awareness of MCS and that you have no desire to harm me or any of your fellow blogging babes. Unfortunately, when you blog about how much you enjoy a fragrance, you are, in essence (no pun intended!), promoting fragrance usage: You’re providing advertising to the company/ies that make these products, and you are acting as a role model (whether that’s your intention or not) of using scented products as a way to live with disability/illness.

Of course, it is your right to blog about whatever  you want, and I understand that having a life that is already limited in some ways, you may wish for freedom and spaciousness about what you blog about, as well as how you live your life.

At the same time, I would like you to take into account that not only can I not wear fragrances, but I cannot be near anyone who wears fragrances, or be near anyone who is wearing clothing that has been worn previously with fragrances (because they don’t wash out), or be near anyone who has stood close to someone else at the store wearing fragrances. In fact, if a family member or PCA has been in a restaurant, house, or meeting with others wearing fragrances, it gets absorbed into their hair, skin, and clothing, and then if they come into my house, those fumes make me sick.

In other words, every time a drop of fragrance is used, it is not staying on you or on your skin. It is not just affecting the people around you that day. It is affecting scores of people you will never know about. Any time someone wears scented products, they are contributing to the isolation of people with MCS.

“Well, now, wait a minute,” you might be thinking. “That is a really heavy burden to place on me! I like you, but I live on the opposite end of the country. If I were going to meet you in person, of course I wouldn’t wear scents that day! Plus, I only use natural scented products, and I only use a tiny bit every once in a while. It sort of feels like you’re asking me to be responsible for the health of every person on the planet! I have enough trouble just dealing with my own health problems. In fact, I don’t know anyone with MCS. Or, actually, I do know people with MCS, and I wear this essential oil all the time, and they never say anything. If it was bothering them, they would say something.”

If you are thinking any of those things, you are not the only one, because I’ve heard all of them many times over 16 years. I would like to address them, though not in perfect order.

First, MCS, like almost all illnesses and disabilities, occurs on a spectrum. So, it’s possible you have a friend who identifies as having MCS who is not bothered by your teatree oil. It’s also possible that this person actually has CS (some chemical sensitivity, but not the actual full-blown syndrome) or mild MCS. Some people with mild MCS can tolerate some essential oils. However, I don’t know anyone who considers themselves disabled by MCS (i.e., has severe MCS) who tolerates essential oils. I, personally, am made less sick by cigarette smoke than by essential oils.

People with chemical sensitivity who can tolerate essential oils are the exception rather than the rule. Much like, there are some people in manual wheelchairs who are willing to be carried up a few steps to get into their favorite pub, but I would still not call that pub wheelchair accessible.

Also, because MCS is so stigmatized and misunderstood, and it causes such isolation and lonelineness, it is also possible that you have people with mild MCS in your life and you don’t know it, because they are trying to keep it a secret. Or that they are saying that  your fragrance doesn’t make them sick because they don’t want to lose you as a friend. (We have all had people who have chosen their products over us.) Or, it may be that it is only making them somewhat sick, so they are just trying to live with it, because it is not making them as sick as most people’s products do.

It’s true that you and I don’t know each other in meatspace, and that we probably never will meet. In fact, I can pretty much guarantee we will never meet because even if you came to my town, and I would love to meet you (which is true of many, many people I know in cyberspace), I cannot take the health risk it would involve to be around your chemical and/or fragranced products.

Even if you don’t intentionally put on fragrance that day, you are still “wearing fragrance,” because being fragrance-free is not something you can accomplish in one day. If you wear scents, they get absorbed into your hair, skin, and clothing. You usually have to shower multiple times in safe products to get scents out of your hair and skin if you have been a habitual user, and you may never get them out of your clothes. Going fragrance-free is a lifestyle.

I’m not saying you are responsible for the health of every human on the planet. Nobody can ever have that great power. At the same time, the choices we all make affect the lives and health of every living being on the planet to some degree. If you recycle or compost or try to reduce your carbon footprint, you are already acknowledging this reality. When you buy fragranced products, you are supporting the industries that make me and my friends sick, and also pollute the groundwater, harm the birds and frogs, etc. It is all connected.

It’s closer than frogs, too. If you go to the doctor, the store, a restaurant, work, or school, if you walk down the street or live in an apartment building or take public transportation, the odds are very, very high that the products you are wearing are making people around you sick. One-third of the population has some chemical sensitivity. In most cases, this is either smoke or perfume or both.

These people on the streets are strangers to you, but since I know people with MCS all over the country (and the world), you might be wearing something that is making someone I know sick. And you’ll never know it.

As for only using a little bit (or even trying to wash off what you put on in the morning when you see the MCSer at night), I appreciate that you’re trying to make an effort, but the reality is that it basically makes no difference for someone with MCS. It’s sort of like the difference between being punched twice in the face versus times. Five times is worse, yeah, but twice does you in pretty solidly, too.

So, there it is, my blogging friends. I just wanted you to know some of the things that cross my mind when I read your posts about perfume or essential oils. I am not saying you are a bad person for using fragrances, but I hope you will consider replacing fragrances with something else that might be pleasurable to your senses.

Maybe the smell of baking cookies could be as enjoyable. Or the flowers from your garden. Maybe you could learn to love nontoxic, fragrance-free cosmetics. (I do! I can refer you to all sorts of fun personal care products that are considered MCS-safer and nontoxic!) Maybe you could find surprising joy, peace, and pride in being an ally to people with MCS.

I can’t say I have the answers for you, but I know the answers exist.

I will continue to read your blogs, and if you post about using fragrances, I will probably feel sad and lonely and disappointed. I will probably try to skip those posts.

I will continue to hope that you will be able to find ways to reduce your pain, and enjoy your senses — including your sense of smell — in new and exciting ways that have a positive impact on human and environmental health. Thank you very much for listening.

Peace,

Sharon, the muse of Gadget (an all-natural dude), and Barnum (also au naturel)