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.

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.

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.

• Ashley van Tol at Lymenaide
• Abigail at Live with Lyme
• Alix at SpiroChicks
• Alyson at Adventures in Lyme Land
• Andrew Peterson at The Next Ten Minutes
• Brooke at Lemon and Lyme
• Candice at Infectiously Optimistic
• Eric Rutulante at LymeBites
• Heather at I Am Not Lyme Disease
• Kenneth Mercure at The Lyme Life
• Kim Christensen at Affairs of Living
• Kim Trick at Wallet Friendly Wellness
• Molly at I’m in the Lyme Light
• SixGoofyKids at Lyme Treatment
• Anika at Five Lymies & a Baby
• Dawn at Brian & Dawn Denio (Access note: This site automatically plays music when you open 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.

 

I'm the shit!

Good dog!

Happy Hanukkah!

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

QuickPress: Barnum’s First Service Skill! (Well, sorta.)

This was not at all planned. Today I am having another “stuck day” like I wrote about a couple of weeks ago.

Today was not as bad, in that I have more range of motion (ROM) in my arms, but still cannot pull myself up into a sitting position to transfer or to prop myself up to use the computer. Problems with legs and torso (especially abdominal muscles).

Unfortunately, the PCA working today has injured her back and is currently unable to help with transfers. What to do?

Before she arrived, Barnum was hanging out with his front half on my bed, looking out the window, enjoying the fact I was awake. I tried to lure him toward me, but we were not communicating. Note to self: Teach Barnum how to come closer to me on the bed, put behavior on verbal and nonverbal cue.

Anyway, when the PCA got here, by writing notes, I was eventually able to ask her to give me one of Barnum’s tug toys, which we seldom use (to keep it special). It’s not one of his favorites (which is surprising, because usually there are few toys Barnum doesn’t love), but having kept it from him most of the time still makes it interesting enough for the occasional tug game. It never occurred to me I could use it as an assistive device, but I needed someone to help pull me forward, and Barnum loves to tug and is very strong!

So Gloria handed me the toy. It’s a yellow slightly-stuffed “tuff” toy, about two feet long, called “Ultimate Tug-o-War” made by mydogtoy.com. I got it as part of my quest for toys that Barnum could not destroy in five minutes of aggressive chewing. (I’ve been working on a post about Barnum the Destroyer for quite a while, with ratings and pictures of which toys I suggest for other large, aggressive chewers, and which toys I don’t recommend, and why.) This one’s rated nine-out-of-ten on the toughness scale of “soft toys,” with many, many layers of fabric and stitching to make it hard to shred. It has a ring on each end and a bar in the middle. Below are some pics of Barnum with the toy.

Mm, chewy.

What? You said I could have it.

Anyway, Gloria gave it to me. I showed it to Gadget, who got very interested. I held it out. He gripped on. I pulled. He pulled. He thought we were playing tug first thing in the day. How lovely! His favorite game! I used his counter weight of pulling to pull my upper body into sitting position.  Yay!

I wanted to hug him and praise him and give him treats, but I wasn’t able to. I put down the toy, too, and didn’t continue to play, which I realize was a mistake, in hindsight. However, at the time, I was in pain, and I really had to pee. I just wanted to get into my powerchair and get to the bathroom.

So, that was very exciting. Obviously, this is not a finished service skill in any way, shape, or form, but it gives me some ideas of what may work as a service skill in the future. Later, I tried to interest him in the toy again when I had clicker and treats and was functioning a little better. But he didn’t want to take it.

I think there were a few factors causing this unusual desire not to grab a tug. One is that it’s not a favorite. If I had held out his spider, I’m sure he would have pounced. Another thing is that earlier he got no reinforcement for tugging with me. He tugged, and then afterward, we didn’t keep playing, he got not praise (because I couldn’t make a sound), no clicks, no treats, etc. Also, now I did have the clicker and treats, so he went into training mode, meaning he kept targeting (nose touching) the toy.

He was also not getting the usual cues for tug. We don’t normally play in my bed. I’m not normally lying down. I wasn’t making any of the noises he associates with play. For example, I couldn’t say my usual cue for tug: “Git it!” Another note to self: Teach tug in bed and nonverbal cue for “Git it!”

Finally, our default for me holding anything out to him is for him to gently touch it with his nose. So, that’s what he did. I tried to shape it into a grab, but I wasn’t up to it, physically.

Nonetheless, there we have it. Barnum has helped me in a useful way for the first time! I still don’t know if we will make it as a service dog team, but I hope so! It felt really, really good to have faced that problem, figured out a way he could help, and then put it into action.

Planned upcoming posts (not necessarily in this order, and not necessarily on time!): Barnum videos of food versus games; memorial to Gadget on the anniversary of his death; and intersection of Lyme and my other diseases — which cause what?

Your comments are always warmly received.

Peace,

Sharon, Barnum (SDiT), the muse of Gadget, and the spirit of Jersey (who never played tug a day in her life)

stuck day

today is a stuck day. i haven’t had one in a long time. i thought i was done with them. that’s lyme for you. once you think you’re doing better, it returns and kicks your ass.

you probably can’t tell today is different from my writing, except that i’m not using caps. if i tried to use caps, i wouldn’t be able to write/post. that’s because all i can move right now are my hands, my facial muscles, some minor head/neck movement like small nods, and the lower part of my right arm. with great exertion and pain, actually, i can move more of both arms, but that’s only for necessities, like signing, typing, positioning. i’ve also reread this later when i was more functional and corrected the huge number of phrases that made no sense.

here’s what a stuck day is like: i wake up and think, “oh, i have to pee.” i realize that i’m in a lot of pain and feel weak, and the idea fleetingly crosses my mind that i might need help to get out from under the covers. “nah,” i tell myself. “don’t be such a drama queen. once you get going you’ll be fine.”

So (oh look, i did a caps! the drugs are kicking in!), I roll onto my side, and i get stuck. i can’t get the blankets off me. i can’t even move my arms or my legs, i realize. i can’t talk. ohshitohshitohshit.

then, i have to find my call button. this is the doorbell i wrote about in a previous post. no, i’m sorry, i can’t put the link in right now. maybe later, when i can move. [note: i’m doing a bit better now, so i’ve put in said links.]

anyway, i need to hit the button which is now loose on top of my overbed table. with great effort i get my left hand up onto the table, and it crawls around like a crab, searching. i hit my “clik-r” clicker button, and i hear barnum pop up. sorry buddy. bad trainer. no cookie. eventually i find and press the doorbell button. thank god!

here’s the problem: i’m lying on my side with my back to the door. i can’t talk or really make any sound. i can’t move at all except my left hand. so when i hear carol, my pca, open my door, i know she is waiting for me to say something or indicate something. and i appear to be all snuggled up, asleep. i try to sort of flap my left hand, opening and closing it, hoping she can see it from where she’s standing, but apparently she can’t, because I hear the door shut. DAMMIT!

“well,” i think, “i’ll just have to ring again. eventually she’ll realize i wasn’t ringing by accident in my sleep.”

yeah, right. cuz i can’t find the fucking doorbell button this time. i press the clicker again another couple of times — barnum’s really curious as to what’s happening now — and i can’t find the button. through tremendous effort i pull myself up a few inches to better search the table and find the button. i grab it — not letting it go anymore today — and ring it repeatedly.

i try to roll onto my back so i can communicate better, but can’t. fortunately, betsy comes to the door. yay! I had assumed she was asleep. she asks if i rang. i sign “yes.”

she asks what’s going on. i sign, “stuck,” which is a v-hand shape, finger tips on either side of adams apple.

her sign is rusty. she can’t remember that word.

“is it your heart?” she asks.

I shake no, then fingerspell S-T-U….

“You’re stuck!” she announces.

Relief. Nod.

“Do you need to go to the bathroom?”

Affirmative.

Thank god, betsy knows the drill. carol does, too, but she has back issues and is getting over the flu, and betsy understands me when i’m nonverbal better than anyone else does. also she’s strong as a power-lifter. she pulls the heavy blankets off me. she pulls my legs toward the side of the bed. she moves my pchair into position. she grabs my hands and pulls me into a sitting/slumped position. I take a moment to rest, then she lifts me onto the chair. i’m no lightweight. i’m always surprised how strong she is.

barnum is overjoyed to see betsy — and me out of bed — and he throws himself between us, wriggling, wagging, kissing, pressing against us. he is soaking up betsy’s attention primarily, because she’s more capable of good butt-scratching than I am. i ask her to stop so i can give barnum some attention, have him just focus on me for a bit.

refreshed by puppy love, we get back to business. i take the call button with me to the bathroom. once there, betsy picks me up off the chair while i pull down my pants (fortunately the muscle lock has eased enough now that I can do this), and i pee . . . for a long time! (you know the scene in A League of Their Own when Tom Hanks pees endlessly and Mae/Madonna takes out a stopwatch to time it? it was like that, except i wasn’t all hungover and gross.) we chat a little, mostly consisting of me mouthing/signing, “this sucks. why is this happening?” and exchange more dog love. Betsy helps me back onto the chair and then settles me in bed (without the quilts, which are too heavy, and even when i’m doing better, could immobilize me just by their weight alone). i just keep my light organic cotton sheet and blanket.

then she leaves me to go do other things and carol steps back in. my first priority is getting pain and muscle relaxant meds in me, so I can function better. i do a lot of mouthing and miming to get across what i need. carol and i get my laptop computer open and readjust my position, overbed table, and screen so i can communicate with her by typing.

one of the worst parts about stuck days is when they are apparently caused for no reason. i have no idea why today i’m doing so much worse than yesterday. i don’t know if this is my fall crash, and now i will be wrecked for weeks or months to come, or if this is just a blip. i don’t know if this is a result of the new Lyme treatment drug i started Thursday. fortunately, i am too exhausted, painful, and crappy feeling to care much about what it all means. i’m just focused on getting through, minute by minute — or actually, task by task. i feel relief that i have carol and betsy here to help me. it feels so much better to have peed and have the right bolsters supporting me in bed. writing this blog gives me something to occupy my brain, other than worrying what the cause of Mystery Stuck Day is and whether it will stretch out into weeks or more from here.

(the meds are really kicking in now, which is good because i can move better and feel less crappy. but it’s bad because i took them on an empty stomach, so i’m getting sleepy and dopey, and i want to finish this blog before i go back to sleep.)

several times since waking up, i have missed Gadget so bad it was a physical ache. if i’d had the energy to spare, i would have cried. but that would have wrecked the small physical gains i’d made, and i don’t even think i have the lung capacity for deep breaths, so i just locked those feelings in. in my heart, i was crying. it’s 20 days till the anniversary of his death, and i feel so heavily the weight of his absence today. he could have helped me transfer — to and from the bed, chair, and toilet. he could have gone for carol or betsy so i wouldn’t have had the stress of not being able to indicate i needed their help. he could have carried messages to them telling them exactly WHAT i needed. he could have opened my door again and again so that i wouldn’t have had to endure what i did to find the call button the second time.

the only “help” barnum provided was licking my face a LOT. i certainly appreciated that, even more than usual, but a little emotional boost and distraction only gets you so far on a day like this.

there’s also the hindering Gadget would NOT have done. (For the record, Jersey wouldn’t have helped me much on a day like this, because she was trained and worked when I was much more functional, but she also would have been very easy — no demands.) gadget wouldn’t have jumped up with his forelegs landing on my legs after i was back in bed, causing severe pain. he could have let himself out to pee and then come straight back in. he wouldn’t have stepped on my burning feet when i was sitting on the toilet. and then. . . .

when carol left me after i was resettled and typing this post, barnum started The Barking. Lately, once a pca (especially carol, his favorite) leaves, he tries to demand their return. after all, i am Boring Lady, stuck in bed, not playing or giving love or attention, while he could be following carol around the kitchen, watching her prep my meals. hearing lovey-dovey talk. getting rubbed behind the ears. etcetera. so, the second they leave my bedroom, he sits at my door and barks.

which is why the pcas all have to ignore barnum until i get up for the day. but i am still dealing with the extinction barking while barnum tries his damnedest to change my tyrannical rule.

lately, i’ve been dealing with this by working on “bark” and “quiet” with him, but being nonverbal, i couldn’t say quiet. HOWEVER, having learned from the past, he knows 3 cues for quiet: ASL for quiet, the word “quiet,” and the sound, “shhhh.” I taught, “Shhh,” because it’s a sound i can make even when i can’t speak. the ASL for quiet requires lifting hands to mouth height, which I can’t do right now.

so, after he has started the very loud, very sharp barking, it occurs to me that i can actually do something about this. i try to call him over to put his front end on the bed near my upper body, but he really only knows all the many ways i have of telling him “off,” for all the times he tries to get on the bed, because normally he wants on and I want off. of course, today i am patting the bed and making kissy noises and he just stands there, waiting for me to make my meaning clear. I can’t communicate “up” nonverbally. something to remember for later: need to teach signed cue for “paws up!” but i have my clik-r, which, despite its other faults (not my preferred clicker), is good for a day like today for two reasons:

1. it takes very little pressure to depress the button, so even on a weak day, i can usually manage it
2. it’s very, very quiet. barnum has excellent hearing, so he can hear it even if i click during one of his ear-splitting barks.

fortunately, i always have treats close to hand, so i click and treat for a silent moment. then we start practicing “shhh,” which goes well. he’s bored, and now i’ve given him something to focus on. occasionally i throw in the cue for “bark,” just to keep things interesting.

i am having trouble pitching the treats onto the floor, so i hold my open hand, palm up, on the bed, a treat on it, and barnum takes it that way. much easier. also, interesting note: he was ignoring most of the treats i threw on the floor, because they weren’t “good enough.” But when i offered them in my palm, he took them. could it be the energy expended was not equivalent to the value of the treat if he had to chase it? Or that, love-bug that he is, the contact involved in taking from my open hand added value? or that he liked the chance to “eat off the bed” which he normally isn’t allowed? the novelty?

at any rate, this gave me an idea. i do want him to learn to have paws/front up on the bed when i need his help, when invited, but not to have any part of his body ON my legs or feet — or other body parts — as that’s too painful. so i moved my hands back, closer to my body, for treating, and he jumped up and settled his torso parallel with my legs. actually warmly just barely touching them. felt good, physically and emotionally. perfect.

then i c/t him for making eye contact, for being quiet and still, and started shaping him to rest his chin in my palm. i mostly used luring. usually i try to use targeting or shaping more than luring, but if there’s anything a stuck day teaches, it’s that you use what you can. when i offered the treat in my palm, i’d click when he put his chin in my palm to eat the treat. i did this many, many times. eventually, i pretended to put a treat in my palm, and when he went to get the nonexistent treat, i clicked for contact and treated in my palm. c/t for that, continued. sometimes actual treat in palm, sometimes luring with motion that suggested treat. after a while i shaped the beginnings of a chin target in palm.

as his eye contact got more frequent, i started introducing my hand signal for eye contact, which is ASL for “look into my eyes.”

it felt really good to be accomplishing something when i was able to do so little. i had gone to sleep with all sorts of schemes and plans to work on recall remediation, using the great outdoors and Premack principle stuff i’ve been learning on the training levels list, because barnum’s recall (meaning, coming when called) ranges from great to eh to abysmal/nonexistent. but today’s physical and communication issues put the kibosh on that.

sometimes, actually, it seems like the best training occurs without plans, without grand expectations, but just by using my instinct, my thumb on the raised clicker button, and whatever the dog’s willing to offer. life with disabling chronic illness is unpredictable, and as wheelie catholic put it in a blog recently, that’s the thing about access — it isn’t a problem until it is. much the same as with everything with a severely fluctuating disability — it isn’t an issue until it is.

suddenly, nothing could be taken for granted, and it forced me to get back to the fundamentals of clicker training: see what the dog is offering, and shape it using just a click and some food. no target sticks. no body movement. no voice. it granted me a great feeling of power and control, of communication and making things happen, on a day when i otherwise was pretty well powerless and struggled to make myself understood by the people around me.

i still missed gadget terribly, because we already had a working language, and because he could have actually helped instead of just offering a challenge to overcome. On the other hand, i did tell barnum’s breeder i like a challenge. be careful what you ask for.

Please comment, if you feel inclined.

-Sharon, Barnum, and the muse of Gadget (and Jersey)

Level 2 Tests, Part 2

Here are more Training Levels tests videos! By now it’s been three weeks since we made these, and we are still practicing and refining the skills at these levels, as well as building the other skills not-yet-tested for Level Two.

A note on accessibility: The YouTube captioning program is, um, extremely limited, to put it nicely. Their software uses an algorithm to match captions to spoken English in the video. This does not work if, oh, say, you usually have a lot of background noise (such as wind or powerchair motor noises); or important noises that are not language (such as the sound of the clicker); and/or you’re not speaking clear English (which is true when my voice isn’t working well or at all, in which case I might also sign). Thus, it took hours of painstaking work to make some badly captioned videos, while other videos were totally impossible to caption at all.

However, the lovely and delightful Anna of Forward/FWD and Trouble Is Everywhere, pointed me toward dotSUB: Any Video, Any Language, which has software that is so much better. You can caption any ol’ damn video you like, regardless of language. Unfortunately, WordPress won’t let me embed the dotSUB video directly, like I can with YouTube.

Sooo, from now on I’m going to embed the non-captioned YouTube videos, and provide links to the captioned version and to the video description/transcript. I wish it weren’t so clunky, but there it is — if we make the internet accessible, then anyone can use it.

Also, here is the captioned version of the video from my previous post that I was not able to caption via YouTube:

• Level 2 Targeting Test — Target sticks

On to the fun stuff!

We are still working on Level Two (L2), but I’ve moved us ahead on Zen (“Leave It”) to Level Three (L3), because, in general, we rock the Zen. (If you decide to watch only one of these videos, watch the L3 Zen test, to see Barnum clowning it up about thirty seconds in.)

Please note: Normally when we train, I make sure there are no distractions (unless they’re planned), and Barnum is really excited to train. We are both focused. This is probably the most important factor I’ve learned from Sue Ailsby’s method [scroll down to the bottom at this link] — Is the dog In The Game?

However, when we test, there’s someone else there filming — sometimes more than one person — and I have to try to remember what the criteria are for each test. I get nervous about the camera, too. Thus, I have a hard time focusing on the training/Barnum. All of these things affect Barnum’s focus, too. So, please don’t think we are normally this flaky and distracted when training! (My timing with the clicker is particularly abysmal.) Barnum has an excuse — he’s only seven month’s old — but cognitive issues or not, there is never an excuse for the trainer! Ah well.

This is the first part of our L2 Crate test — the crate in my bedroom. The criterion for Level Two crate is that the dog enters the crate with no more than two cues, allows the door to be opened and shut, with no pawing or vocalizing.  This is the crate we use the most. We had a false start, but I decided to consider it a fluke, because we use this behavior all the time. The non-captioned version is below. See the captioned version here. Read the description and transcript here.

This is part 2 — the crate in the living room. Ironically, though we use this crate a lot less, Barnum does better in this part of the test, pretty much because we had the two previous sessions in the bedroom (practice!). See the captioned version here. Read the description and transcript here.

This is our L2 Distance Test. I never taught this as a distinct skill before, but I’m loving it. I already use it sometimes when I’m sitting in bed and I want Barnum to come around my wheelchair from one side or the other. I can tell we can use this one a lot in the future. The criteria are that the dog must go around a pole or other object two feet away from the handler, with no more than two cues. See the captioned version here. Read the description and transcript here.

Finally, our L3 “Zen” Test. The dog must leave alone food in a stranger’s hand for 20 seconds, one cue only. (I wrote “40 seconds” in the description that accompanies the video, but that’s wrong.) He met my neighbor once before, but he was focused on her dog that day, so he doesn’t really know her. (Though we do still have some work to do with manners, as you’ll see when he starts to snorffle her pockets!) See the captioned version here. Read the description and transcript here.

Comments are always more than welcome!

-Sharon, Barnum, and the Muse of Gadget

Pushing Buttons: My Love/Hate Relationship with My Doorbell

For most people, the relationship between their doorbell and their dog is this: Someone rings the doorbell, their dog barks and runs to the door.

I didn’t have a doorbell before Gadget died. People either knocked or just came on in. I don’t know if he would have barked at it.

We got the doorbell because Gadget died.

Gadget’s death has meant a severe decline in my ability to communicate with others in my household. I miss this help every day, several times a day. Very soon after he died, I was beside myself with grief and frustration over my increased isolation and decreased ability to communicate.

This is how Gadget helped me communicate with people in my home: When I needed one of my personal care assistants (PCAs), Gadget opened my bedroom door and flagged them down. If he didn’t show up with them, at least now my door was open and they’d be more likely to hear me ring my bell again, or I could hear if they were washing dishes or had the fan on and that was drowning out my attempts to ring for them.

On occasion, if I was in the bathroom alone with the door shut for privacy, and I didn’t have my bell with me, I’d call Gadget. He’d open the door. I’d send him back out for a PCA, then call him back again. My PCA would realize we were trying to get her attention.

What’s been harder is not being able to communicate with my human partner, who is in a sound-buffered room on the second floor, when she’s home. When I wanted to tell her something, I’d write a note, stick it in Gadget’s collar and tell him, “Find Betsy!” It didn’t matter if I could voice or not because Gadget knew both signed and spoken commands. He would gallop upstairs, open Betsy’s door, and run to her (sometimes run into her).

He demonstrates this skill in the video below.

Click here for a captioned version of the video.

Click here for a text description and transcript of the video.

If he came back to me without the note, I knew he’d delivered the message. If he came back with the note, I knew Betsy was asleep or outside or otherwise beyond reach. If I needed him to wake her up, I’d tell him to go back, and he’d bark and paw at the door or nudge her or generally make himself a nuisance till she responded.

Gadget makes sure he has Betsy’s undivided attention

Sometimes Betsy would write a reply for him to deliver to me. He loved that, particularly.

When I lost Gadget, I suddenly lost part of my relationship with Betsy, too. Betsy came up with the great idea of using a doorbell to bridge this gap. When she showed it to me, I cried with gratitude.

I love the doorbell.

Here’s how it works: It’s a wireless doorbell with two separate parts. The button is taped to my over-bed table, and the chime can be plugged in anywhere there’s an electric outlet. Usually, it lives in the kitchen. I push the button, and my PCAs hear the chimes ring throughout most of the house. My PCAs were thrilled with how much louder and easier to hear it was than what we’d been trying before (the puny “beep” of the “horn” on my powerchair or a bell I rang by hand).

I was so relieved that it was working. Yet, I also worried that people would think I didn’t need another service dog because now I had this doorbell that worked so well. It felt almost disloyal to Gadget. I told my friends I felt guilty that I was replacing Gadget with technology.

My friends said, “You’re not replacing him. You loved Gadget. He was so special. That can never be replaced with a doorbell,” but it felt like they were talking about the loss of love, the heart-dog loss. I wasn’t just talking about that. I was talking about that and the Gadget who was my arms and legs and voice. I didn’t know how to explain the wholeness of Gadget as my partner, and the essentialness of that partnership beyond finding a solution for any one task — my longing not to make do in life any more than was strictly necessary.

Still, here was this wonderful doorbell, and initially, I was so happy with it. I let go of my fears of how others would interpret my “replacement” of Gadget.

The doorbell has its limitations.

Sometimes I press it, and I can’t hear it ring. Sometimes, nobody comes right away. Then I don’t know — are they in the bathroom? Outside? Did I not press the button hard enough? Should I press it again, or will that cause annoyance?

Also, if Betsy is upstairs asleep, the chime in the kitchen won’t wake her. The doorbell is also a totally one-sided and “one note” form of communication. All it can convey is, “I’m trying to get someone’s attention.” Generally, that’s the most important point, but I can’t indicate whom I’m trying to reach or tell them, “Before you come to my room, can you please grab such-and-such?” Or, “The phone’s for you. You didn’t hear it ring because I was on the other line, and I picked up call waiting.” Or, “Help! I need you now!” Or, “You don’t have to come now, just when you get around to it.”

I also can’t reach the button to ring for assistance if I’m not in bed. If I’m on the commode — just a yard away — or in the bathroom or even in my powerchair right next to the bed, it’s beyond me. If I’m stuck on the toilet, and my voice isn’t working, I can’t call the doorbell to me, no matter how appealing I make myself. I cannot entice it with cheese or liver or belly rubs.

The doorbell is better than the nothing I had after Gadget’s death, but it is still just technology, and technology is always limited. It can’t adapt. Gadget and I trained so that he would look for Betsy whether she was upstairs or downstairs. He could look for her or listen for her. He could use his nose and sniff her out if he didn’t see or hear her. He could get creative: One time, when she didn’t unlock her door for him after I’d sent him up with a message, he got frustrated and barked. I didn’t teach him to bark when she didn’t let him in; he escalated his behavior because what he had been trying wasn’t successful. His new strategy worked! Betsy came out and said, “Don’t tell him to bark for me because I’m making calls for work.” I said that I hadn’t, that he’d done it on his own, but I did reward him for it. I didn’t know when I might need her urgently and he’d need to use persistence.

My PCAs learned how to interpret Gadget’s behavior and generally guessed correctly why or whether I was sending him to them. We were all part of a team; I was captain, and Gadget played center.

I hate the doorbell.

A chime, at best, is neutral. It’s an alert.

At worst, it’s irritating. It can feel like nagging. I’m starting to sense a slight undertone of annoyance in the household when I ring frequently.

It’s nobody’s fault. People enjoy being summoned by a dog. They feel sought out and special, and they get to be part of the reward. “Does Sharon want me? Good boy!”

A doorbell doesn’t wag its tail. It doesn’t get excited at the prospect of a treat and go galumphing past the person it has summoned to get to me first. It doesn’t feel satisfied at a job well done. It’s just a piece of hard plastic that I’m grateful for and resent.

It would have been impossible to resent Gadget. Even at my most exhausted, frustrated, sleep-deprived, anxiety-ridden, overworked, and done-in over his being sick, I loved him. Even when he was young and difficult and drove me to tears, and I’d say things like, “That’s it! I’m making dog burgers tonight!” I loved him. I loved him far beyond my ability to express it in a blog.

The intercom.

Betsy and I are both dissatisfied with the limitations of our intra-house communication. Thus, Betsy ordered an intercom for my birthday. She told me ahead of time that it was coming; I was losing it over our communication breakdown, and she knew it would be a while before it arrived because it was on backorder. I was so grateful that she recognized my frustration and aloneness that I burst into tears and hugged her. It finally came today. I opened the shipping box and just made goo-goo eyes at it. I can’t wait until she installs it. It’s taking all my willpower not to nag her about it incessantly.

I’ve learned my lesson, though. I’m preparing myself for this new technology’s limitations: The intercom might be “smelly” (offgassing new plastic fumes), so that I won’t be able to use it until it has aired out for several months. Even then, at times when I can’t produce intelligible speech, the intercom won’t be as helpful as we’d wish. Finally, like the doorbell, if I am not next to it, I won’t be able to activate it.

In short, I will be grateful for it when it works and frustrated by its limitations.

Despite all this, it will be a big step up from the doorbell. But it will always be miles and miles away from replacing Gadget, my partner.

-Sharon and the muse of Gadget

As always, we welcome your comments.

P.S. Another “About” page is up, about how multiple chemical sensitivity (MCS) affects me and my service dog partnerships. Click here to read the MCS page.