Archive for the 'Lyme Disease' Category

Why Barnum Is No Longer My Service Dog

Hi!

I don’t blog here at After Gadget anymore. I moved to SharonWachsler.com over a year ago, but I still get notices from WordPress telling me that new people have subscribed to After Gadget. This post is for you subscribers to tell you my REALLY BIG NEWS and to invite you to subscribe to my ACTIVE blog, sharonwachsler.com because this blog you’re subscribed to here generally has no new content!

Moving alone: My big news is that I no longer have multiple chemical sensitivity (MCS), and I no longer have chronic fatigue immune dysfunction syndrome/myalgic encephalomyelitis (CFIDS/ME), and I no longer have chronic Lyme disease and coinfections! Thus, I no longer need a service dog! Barnum has been “career changed” to “demo/training/sport dog” as I work my way toward becoming a professional dog trainer.

I am currently interning with two trainers, Caryl-Rose Pofcher and Elise Gouge. I’m learning tons from both of them.

Barnum and I have not started our sport training yet. He has had an ear infection for 16 months (no, that’s not a typo!) which has been treated with everything you can imagine, from ointments to oral antibiotics to acupuncture to full-sedation ear flushes. We think this very nasty chronic infection is due to underlying hypothyroidism (already being treated) and food allergies (which we’re sussing out now). This means that he’s on an eight-week trial of ostrich and quinoa. Although I have found ways to do treats and toys with ostrich and quinoa, it’s incredibly expensive and time-consuming, so I’m waiting to do classes with him till the food situation is easier. We will start introducing new foods into his diet in three weeks and see how he does with them. (Yay!) I already know he’s allergic to chicken. I am really, really hoping he is not allergic to beef, pork, turkey, and/or duck.

If you want to keep up with me and Barnum, or if you want to know how I recovered my health after 18 years of severe, disabling illness, please check out my current website, SharonWachsler.com. That is where I blog now. That’s where I have info about my writing, consulting, dog training, etc. If you want to skip directly to my recovery story, including “before” and “after” pictures and videos, read the post I published a few days ago. If you want to learn more about neuroplasticity and HOW I recovered, visit my page on neuroplasticity and my recovery.

I’ll leave commenting open here for a short time to support ease for readers who are not familiar with my new/current blog, but my strong preference is for you to comment on my new site (so I don’t have to keep logging in and out of two different websites). Thank you so much for your support and interest in my blogging and all-things-dog over the years! I really appreciate all I have learned and continue to learn from you!

Love,

Sharon and Barnum, Former Service Dog

What a Bartonella Herx Looks Like

Today’s post feels very vulnerable. It contains two short videos of me that are not the way I normally want people to view me. However, my desire for understanding for myself and for other people with Lyme and other tick-borne disease is stronger than my worries of what viewers might think about me.

I’ve been very sick lately. Partly this is a result of Herxheimer reactions I’m having from a powerful medication I’ve recently started using to fight one of my tick-borne diseases, bartonella. Bartonellosis is also sometimes called cat scratch disease.

Even though I’ve been treating Lyme disease for over five years, there are still people in my life who don’t really understand what herxing is and why treatment sometimes seems to make me worse. So, I decided to video myself going through a herx reaction as a way to help my friends understand.

I also want this information (both the videos and the written information here) to be available to the general public, especially other people with tick-borne diseases (TBDs), their families, and the medical community. TBDs are still not very well understood. For example, there are 26 known strains of bartonella, but when people get tested, they are typically only tested for one strain, bartonella henselea — the strain that causes cat scratch fever.

I never had a positive bartonella test, but because of my other symptoms, known tick bite and other positive TBD tests, I was diagnosed clinically. I hope this post will answer questions about what herxing is and why people with TBDs persist with a treatment that appears grueling.

Often when I tell people that I’m sicker because I’m doing a new treatment, they think I’m experiencing side effects from the drug. This is not the case. According to drugs.com:

side effect is usually regarded as an undesirable secondary effect which occurs in addition to the desired therapeutic effect of a drug or medication.

In other words, side effects are never good. Whether you stay on a drug that’s causing side effects or not depends on the severity of the side effects and the usefulness of the drug; but drug side effects are never an indicator of efficacy.

A Herxheimer reaction also involves unpleasant symptoms (which can range from brief discomfort to serious and prolonged or even deadly symptoms) that occur after taking a medication. However, these symptoms are not side effects of the drug, itself. Instead, they are the result of massive die-off of pathogens by the antimicrobial medication (usually an antibiotic, but sometimes an antiparasitic or similar). These dead or dying microbes release toxins into the body, and symptoms result until the body is able to process and eliminate these toxins (detoxify).

This Chronic Illness Recovery website explains herxing well:

Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response.

The treatment of many bacterial infections provokes a Herxheimer reaction. Herxing was originally observed in patients with acute infections such as syphilis. . . . The immune system response to acute infection is sometimes referred to as the immune cascade. For example, in the infamous anthrax attacks people died because by the time they got to hospital the anthrax organisms had multiplied to the point where killing [the anthrax organisms] also killed the patient.
It has been reported that patients with chronic conditions or infections such as rheumatoid arthritis, Lyme, tuberculosis and louse-borne relapsing fever have also experienced herxing when treated with the appropriate antibiotics.
Chronically ill patients are carrying a heavy load of intracellular pathogens by the time they become symptomatic. . . . The immune system response when these intracellular bacteria are recognized and killed causes a similar immune cascade.
In other words, herxing only occurs when a treatment is appropriate and effective. If you are not infected by the particular microbe you’re targeting with a particular antibiotic, you will not herx on that antibiotic. And generally speaking, the worse your infection is, and the more effective the antibiotic is at killing it, the worse you herx.* For this reason, herxing is also sometimes referred to as a “die-off reaction” or a form of “healing crisis.”
Although herxing has caused me a lot of physical and emotional distress over the last few years, I also find it a useful tool. Whether or not I herx on a particular treatment can be a helpful indicator of the presence or severity of a given infection. It can also provide information on whether a given drug is efficacious or not for what we’re trying to treat.
People often ask me how I can differentiate between when I’m experiencing a herx and when I’m experiencing a bad reaction to a drug or suffering from a drug’s side effects. Although it’s not always entirely straightforward, usually the following is true of a herx, for me:
  • Herx symptoms are often stronger versions of what I was already experiencing as symptoms of tick-borne disease (TBD). For example, I often have increased pain, exhaustion, shortness of breath, and weakness when I herx, but these are already symptoms I’m living with due to TBDs. The herx just makes them more intense.
  • Some herx symptoms are known symptoms (sometimes esoteric ones) of the TBD I’m treating. For example, burning on the soles of the feet and shin-bone pain are two classic symptoms of bartonella, both of which I have had pop up or worsen when I started a drug that treats bartonellosis. Air hunger and night sweats are classic babesiosis symptoms, both of which worsened for me when I started treating babesia a few years ago with antimalarial drugs. Also, some TBDs tend to act unilaterally and others act bilaterally, so a symptom that was present before in both sides of the body might worsen on one side only during a herx; bad reactions to medications and side effects are not usually this quirky. Although I started having joint pain soon after I was infected by a tick, it was not until I started treatment that I had joint swelling. Five days after starting the antibiotic Flagyl, my toes swelled up. Later, when I started Bicillin (an intramuscular injection of penicillin), my wrists and knees puffed up. Eventually, after sufficient treatment, my toes and joints regained their former appearance. Likewise, I was having trouble voicing when I woke up yesterday morning, and I was already exhausted and in pain, though happily, my voice had returned to full strength shortly before I started my infusion. (Also, I was working so hard while being videoed at explaining what was happening with me — using notes to try to be comprehensible and accurate — that I actually think I look less sick than I was. After we stopped taping, for example, I went into an extended coughing-and-trouble-breathing jag and also was just lying there and unable to move my arms much to rest up from the exertion, but hopefully you get the idea.) So when my voice went away again during the infusion (as you’ll see in the video), that was a pretty obvious sign of herxing, but I have been nonverbal most of the last six weeks, whether or not I’ve done a recent infusion.
  • Herx symptoms usually hit hard and fast and then (eventually) go away. Most of the time, if I take a new antibiotic orally or by intramuscular injection, the herx will start within a day of the new treatment. Sometimes within a few hours. There are variations. Sometimes it starts out mild, with just one or two symptoms, and over the course of a few days, the symptom get stronger and others reveal themselves. If I am infusing the antibiotic (intravenous therapy), the herx usually starts within minutes (as you’ll see in the videos below). How long herxes last varies a lot. I seem to herx for much longer than most other Lymies I’ve talked to. I’m not sure why. Maybe it’s because I was so severely infected with so many pathogens for so long, and then I started aggressive treatment with multiple drugs, full strength, at once (which I will never do again and strongly advise against!), but I herxed for well over a year on some drugs (probably because they were in combination). With side effects, or other adverse reactions to drugs, usually I do not start out with that symptom, and then it appears and increases over time. With herxing, it’s the opposite: it starts out strong, and then it gets less severe. Eventually the herxing stops and I feel better on the antibiotic than I did before I started it.
  • By now I am familiar with what most of my TBDs do and what my herxes feel like. Some examples are listed above: muscle and joint pain, exhaustion, tremor, weakness, dysphonia, etc. Other symptoms were harder for me to clue in to. For the first year or two after the tick bite, I was really crazy a lot of the time. I didn’t realize that the way I was feeling emotionally was a symptom of the TBDs. I also didn’t know what herxing was. So, I was already experiencing a lot of psychological and behavioral symptoms that I wasn’t really aware of. (I just thought everyone else was being unreasonable.) Then, when I went on antibiotics, the symptoms got worse. The more powerful and effective the treatment was, the crazier I got. This caused serious damage to my relationships and sense of self because I was not aware of what was happening, nor did I have the supports I needed to manage it. Now, before I start a new antibiotic, I tell key people in my life so they can be on the watch for any psychological symptoms I might be unaware of. However, after six years of dealing with this, I’m now very tuned in to what is “me,” and what is “the bugs eating my brain.” Fortunately, I don’t have psych herxes with every new drug. They seem to be worst for babesia (mood swings, desolation, hopelessness, paranoia) and Lyme (agitation and rage).
Below are two very short videos I made yesterday. The first one is at the beginning of my infusion, and the second one is 25 minutes later, at the end of the infusion. I chose to video yesterday’s infusion because: 1. Yesterday morning I had relatively clean hair and good natural light. 2. I was increasing my dosage so I thought it was likely I would herx. (As it turns out, I herxed much faster than I’d expected.)
If you’re reading this in an email or to watch the captioned version of Part 1, click here. A transcript of both videos is at the bottom of this post.
The Youtube of Part 2 is below, but it’s all nonverbal and signed, so unless you can understand really exhausted, broken ASL, you’ll want to watch the captioned version.
Now that you’ve watched the videos, I hope you will keep these three things in mind:
  1. Herxing subsides in time. I will not go through this every time I infuse this medication. Eventually it will make me feel better, not worse. I’m on several other antibiotics that have helped me improve a lot, and if I go off them, I tend to get worse (unfortunately). Meanwhile, the herx tells me the drug is doing what we want: killing the bacteria.
  2. Everyone’s herxes are different. There are some common bartonella symptoms, but each person’s constellation of symptoms are unique.
  3. If you are starting treatment for Lyme or other TBDs, I strongly recommend only going on one new treatment at a time until you are tolerating it well and also starting at low doses and ramping up over time. In both the short and long run, it’s safer and kinder to yourself not to try to tough out the most extreme herx possible.
I hope this was useful. I welcome comments and questions. I also hope you will share links to the videos and to this post to spread awareness of tick-borne diseases and their treatment.
-Sharon, the muse of Gadget (canine Lymie), and Barnum, SD
*This does not mean that herxing always occurs every time someone takes an antibiotic for a bacterial infection! Some types of infections are much more likely to cause herxes than others, and a few fortunate people don’t seem to herx in situations where others do.
P.S. Betsy walked into my room later that day and said, “Are you wearing makeup?”
I said I was because I’d made a video of myself, and then I showed it to her.
She said, “You put on makeup to show how sick you are??”
I said no, not to show how sick I am, but to show what herxes can look like. And, “Just because I’m sick doesn’t mean I want to make a video looking like crap!” I mean, these images stay on the interwebz forever…. Sheeh! It’s a femme thing….
Transcript of First Video:
Sharon is propped up in bed, oxygen cannula in her nose and IV line running from under her shirt off camera to her side. Sharon: Hi, it’s Sharon. I’m just starting my Rifampin infusion this morning — to show the difference between before a herx and after or during a herx. Right now, before it’s starting, my pain is about a four or five throughout my body. And my voice is working, as you can hear. Oh, it’s already starting. [Voice becomes scratchy.] I’m feeling some tightness in my chest, and um, starting to get cognitively impaired, and my voice is starting to go a little bit. And I’m starting to have trouble breathing, which is why I set up the oxygen before we started. But I was not expecting it to go this fast. [Voice becoming more hoarse.] So [laughs, coughs] I’m a little surprised and unprepared for how fast it’s hitting, and I’m going to take a break now and finish recording later. Off camera: Cut? Sharon: Yeah.
Transcript of Second Video:
[Sharon lies in bed and begins signing. She signs with her hands low, near her lap, and she doesn’t body shift. She is slumped against the pillows more than in the previous video and sometimes breathes hard with effort. She is not making eye contact with the camera but looking to the side at her computer screen.]
Sharon: Now, near the end… [looking toward the IV pump]
Woman’s voice: Signing? Infusion?
[Sharon shakes her head no each time the other person speaks.]
Sharon: It’s hard for me to breathe. I’m using oxygen at 4 LPM [liters per minute]. Pain is up, muscles locked up. Burning pain in my right shoulder, diaphragm, and right foot. And I can’t move my legs. More difficulty moving my body. For example, grabbing, uh. . . . [Sharon looks around and reaches for her pill box next to her and picks it up and moves it closer to her, which seems to cost a great deal of effort.] Sharon: That’s work! [Laughter turns into coughing] It’s hard to think, to find the right words. I’m reading now — to remember to say, um…. This is how hr… no, herx from bartonella looks. Thank you. That’s it.
Woman’s voice: Cut.

Three Years Ago Today

Gadget died, November 19, 2009.

Gadget lying on his front on a brown couch, his chin resting on a red quilt on Sharons knee. Sharon -- bundled in a turtleneck and hoodie -- has her hand on Gadgets neck and is smiling a little fixedly toward the camera.

Gadget and me in November of 2009

It was a week before Thanksgiving. We knew his death would come soon, but I had hoped he would hang on till after Thanksgiving. I wanted to be grateful for his presence. But the mast cell cancer raced through him, consumed him like a brush fire, destroyed him on the cellular level so that the pathologist couldn’t even be sure if he was looking at lymphoma cells or mast cells. We took our best guess, but it didn’t matter, because there was no halting it. Gadget was ready to die a week before the “holiday.”

In my former life, Thanksgiving and Passover had been my two favorite holidays, which I had celebrated with my two best friends every year since 1993. They had stopped speaking to me, so the holiday was also full of that loss.

My parents and Betsy’s mom came and tried to give us a normal Thanksgiving. I just wanted it to be over. I was a dull, relentless pain wrapped around hollowness. I couldn’t imagine ever feeling OK again, or normal, or happy.

A lot has changed since then. I still don’t really have anyone to celebrate holidays with. Those two former friends are still gone from my life, just as Gadget is. But I have Barnum. I am much less sick. I have projects I’m passionate about. Barnum has taken me on a completely different voyage than Gadget did. Thank dog.

I’m not overflowing with gratitude today, nor will I be this Thursday, I expect. The only way the day will be different is that my usual Thursday PCAs won’t be working, and a couple of other PCAs will work backup. Ah, there. Something I’m grateful for: The PCAs who are covering shifts on Thanksgiving.

The thing about anniversaries is that sometimes they sneak up on you and you don’t know what’s wrong till you’re sobbing with snot running down your face, crying in confusion, “What’s WRONG with me today?” And other times you anticipate the day with dread and then it passes, like a wave that had already pulled you out to sea, so by the time it crashed against the shore, you only felt the slight pull, the rise and fall.

I’ve been swimming in the tumultuous ocean for the last few weeks. One or more of my tick-borne diseases are acting up, causing worsened cognition, emotional disturbance, and migraines. This has made everything harder. I’ve been very triggered. Too many reminders of the season — of the onsets of my illnesses, of the trauma of natural disasters, of the losses of friends to death or … what is a neutral term for friends who have decided they don’t want to be your friend anymore? Anyway, a season of loss.

Fortunately, I’ve been very busy, and not too sick. I am in the midst of some exciting interviews for Ability Maine. I’m working on my book project very . . . very . . . very slowly. I’m trying to figure out what will go here: sharonwachsler.com. So, there are new beginnings.

But, for tonight, kindness and gentleness toward myself. If you learned anything from Gadget or loved anything about him, please post it in the comments or send me an email. If you’d like to light a (yartzheit?) candle in his memory, you can do it here.

– Sharon, Gadget — forever in my heart — and Barnum, blessedly healthy SD/SDiT

When Your Service Dog Is Too “Smart”….

OK, so now you know I’m writing and blogging elsewhere, although I still plan to do my service dog blogging (and related stuff) here until I can get my own domain set up. Except for today’s post, because it turns out that won’t work. So I’m posting it on my writing blog, SharonWachsler.blogspot.com. I apologize for the inconvenience. Future Gadget- and Barnum-related posts will be back here at After Gadget!

You asked so many great questions about my experiences as a service dog (SD) partner and trainer that it is taking quite some time for me to write all my answers. I am also still finishing Barnum’s training. Until now I wanted to wait to train him to open the outside door to let himself out because I wanted to make sure he was really solid on having his door-opening behaviors under stimulus control. Which leads me to today’s topic.

Two of you asked about my funniest or most embarrassing experience as a SD handler, and that brought to mind this story which I’ve posted at SharonWachsler.blogspot.com.

– Sharon, the muse of Gadget, and Barnum, SD/SDiT (who will hopefully know better)

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

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

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

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

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

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

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

– Sharon

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

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

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

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

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

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

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

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

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

i can’t say, “blog,” but i can type.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

this is me. radio silence.

love,

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

Product Review: Tick Removal Forceps (Updated)

May is Lyme Disease Awareness Month, and it’s been a terrible* year for ticks here, so I want to tell you now about absolutely the best tick removal tool I have found, which are these forceps:

Close-up of thin metal forceps that are rounded at the tip grasping a dog tick on a yellow-coated animal

Forceps removing a smallish dog tick.

I have posted about other tick-removal tools, including the Tick Key and the Tick Tool. Both of these tools work well for removing medium-to-large size ticks, such as dog ticks, or even some adult deer ticks. They are better than fingers or tweezers because

  • You don’t have to touch the tick with your fingers when you remove it
  • You won’t squish the tick (and squeeze its gut contents, which contains virulent pathogens, back into the dog, cat, or human you’re removing it from)
  • They are easy to hold and can be used by feel if you are blind or low-vision

Where these two tools fail in a major way is when dealing with tiny ticks, especially soft ticks, such as deer tick nymphs, which are both tiny and squishy. This is a big deal because most cases of Lyme disease in humans are caused by deer tick nymphs. I would be surprised if the statistics were not similar for dogs. Make no mistake, however — all ticks can cause serious disease in people and humans. Some of the the illness-causing bacteria and parasites that ticks carry include babesia, bartonella, anaplasma, ehrlichia, STARI, Rocky Mountain Spotted Fever, and tularemia, among others. The longer a tick is attached, the more likely it will pass on disease.

I found the Tick Key to be totally useless for very small ticks and the Tick Tool to be hit-and-miss with deer tick nymphs. Often, they would slide through the slit that is intended to catch them because the slit is too large, even at its smallest point, for these tiny, squishy ticks.

The result is that I usually would have to remove such ticks with my fingers, and about half the time, I’d squish the tick and leave the mouth parts behind, still embedded. This is not ideal.

Then, in the comments of my Tick Key review, my reader Courtenay — who is a veterinary technician, as well as a dog trainer and rescuer — told me about the Tick Removal Forceps she uses. The forceps are designed and sold by Jon Vilhauer, a (recently retired) veterinarian. His site, remove-ticks.com, explains how and why he designed them, and why they are preferable to other tick-removal methods:

We have . . . what is probably the only surgical-quality instrument made specifically for tick removal.

The  new  tick forceps are:

o        Fine-tipped, so you can grasp the tick’s head without squashing its body and squeezing tick juice out all over the place

o        Curved, so you can see what you are doing and avoid stabbing your not-always-cooperative patient

o        Sturdy enough to put serious traction on deeply embedded ticks

For tick removal from dogs, cats, or humans, nothing else works as well.

The forceps are terrific! With them I have been able to remove even deer tick nymphs, without squishing them or leaving the mouth parts behind. And the price is right, too: $12.75, including shipping.

The only drawbacks I can see to the forceps are that they require more hand-eye coordination than something like the Tick Tool or Tick Key, which might be an issue for people with certain disabilities. The ends are quite pointy, so you have to be careful not to stab yourself or your animal with them. But if you have a moderately steady hand and/or a reasonably willing patient, these cannot be beat.

Jon’s website answers questions about how to remove ticks, why ticks are so hard to remove, how quickly ticks should be removed, and what happens if the head is left in. He also shows a whole bunch of other tick-removal tools and their pros and cons, so you can compare. Some of the others I was not even familiar with. I think this part of the website — about tick removal tools — is useful. I do not, however, agree with all of what he writes about tick-borne diseases, Lyme disease, and transmission of disease by ticks. For more information on these topics, I suggest reading my compendium of tick- and Lyme-related posts.

I emailed Jon before I posted this review. He said he had about 60 pairs left. I’m planning on buying at least one as a backup pair. If I can manage to get organized I’d like to do some Lyme myths posts and then do a quiz on Lyme knowledge. Whoever wins will get a pair of tick forceps. But since I never know when I will be functional enough to do this kind of thing, better buy your forceps now and don’t count on me!

UPDATE: Since so many people have ordered forceps due to this review, Jon has now ordered a new shipment, although it will take a few months to arrive. He’s concerned that he won’t be able to respond fast enough to eBay sales, especially since the number of orders has gone up so much, so he’s asked me to post the remove-ticks.com website instead. I’m very glad these tools will still be available for anyone who wants them in the future.

Four paws up for these forceps!

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

Notes:

1. I have received no compensation or any other benefits or inducements to do this post. I’m posting this glowing review simply because I believe in this product and am trying to make the world a safer place for us and our animals to deal with disease-ridden ticks.

2. To read other posts at After Gadget about ticks, Lyme and other tick-borne disease in both humans and canines, visit this page.

*Terrible is kind of an understatement: Last night we found 18 ticks on Barnum. The night before we found 28. Never before have we found anything approaching those numbers. None were at all engorged, which means we had not missed them in the previous night’s search — they were new ticks, in other words.

Update: Illness, Writing, Not Much Training

Howdy.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good Grief: The Healing Power of Communal Mourning

I’ve written about grief on occasion here, and usually I get comments along the lines of, “I’m so sorry this is so hard for you.” Now, I always love to get comments! I love to know people are reading, and I’m interested in how my posts affect them and what they have to say. And I appreciate their heart-felt sympathy. At the same time, these comments have surprised me because I’ve been so relieved and happy that I am finally able to grieve. It sounds strange, but to finally be able to blog about my grief and to actively grieve is a wonderful gift. I celebrate it.

I think some of the dissonance between how I feel and how others guess I feel might have to do with a few factors, maybe in combination:

  • the difference between the noun (grief) and the verb (grieving)
  • my perspective on grief, which is at odds with our American culture’s relationship to grief
  • the fact that the ride I’ve been on in the last few years is not one most have taken. (Thank God.)
  • how I am coming to experience and express emotions since I started practicing Nonviolent Communication (NVC).

What do I mean by the ride I’ve taken? Well, I experienced a truckload of losses in a short time, and both because there were so many things to grieve, and because I was in a fight for my life, and because the very losses I incurred severely reduced my resources for coping and grieving, I was just way too overwhelmed to process it all. (If you know my story, you can skip the bulleted list below.)

Beginning in November 2007 and culminating with Gadget’s death in November 2009, I suffered the following losses:

  • basically overnight, due to Lyme disease and other tick-borne diseases, I lost the ability to speak, move my limbs, sit up unaided, tolerate sound/touch/light/movement, which then involved the loss of communication and of my independence and freedom to go to the bathroom, get out of bed, feed myself, bathe, brush my teeth, etc., without a great deal of assistance
  • along with all the above was intractable pain, both body pain and continuous migraines. Pain isn’t usually described as a loss, but it’s horrible and traumatic, and it definitely involved loss of joy and ease and all sorts of things that are hard to put into words
  • also along with this, I experienced major mood and behavior changes (due to neurological damage from tick-borne diseases), which actually left me feeling like I had lost my self. I hadn’t even thought it was possible to lose myself before, and the fact that I could be taken over like that by feelings I hated and couldn’t control was terrifying, painful, and a source of shame (compounded by the way others reacted to my moods and behavior)
  • loss of important parts of my mind/cognitive functioning, including interest in writing, sex, or any form of creative expression
  • all this led to serious relationship damage with virtually everyone in my life, and the loss of trust and safety I had previously felt
  • then I went through a natural disaster which I’ve written about before, which caused me PTSD and further losses in my sense of safety in my home and in the world
  • immediately following that, my best friend of 16 years (and my main interpreter) ended our relationship, and her sister, my other best friend, and I experienced a tremendous strain in our relationship, so that we barely spoke
  • one of my best friends, Norm Meldrum, died
  • my therapist terminated with me
  • other friends left me or died
  • Gadget, my service dog, was diagnosed with lymphoma
  • Gadget died of mast cell cancer
  • my remaining best friend finally ended our foundering relationship

That’s a crapload of loss. In two years, I lost almost my entire social network and family of choice, my service dog, my functionality, and virtually any feelings of self-worth. Most of the meager sense of self I had was tied up in being Gadget’s partner. He needed me. We were a team. He was not resentful about doing things for me, and it was my mission in life to save him, to keep him alive. I believed that even if I didn’t matter to anyone else, I mattered to him.

And then he died, and part of me died with him. It was too much. I couldn’t bear it. Something in me broke.

When I sought out support, people kept telling me to journal about him and to “let my feelings out,” to cry. But I couldn’t. I physically couldn’t journal (by hand) for the most part, and when I tried, when I could type, I didn’t know what to write. Nothing came out — and I’m a writer! I tried to cry and nothing happened. I just felt blank. I felt empty. The other people on my dog grief list talked of crying every day, many times a day, and I’d think, “What is wrong with me? Did I not really love Gadget? What kind of cold-hearted freak am I?”

There were two times I connected to my grief over losing Gadget, and they were so horrible, I can’t describe it. It was like being thrown into a bottomless black pit. I felt like my heart was squeezed into the size of a walnut. The emotional pain was so bad, I wanted to die. None of this feels adequate to describe the experience. If my feelings were a painting, it would be Edvard Munch’s The Scream.

I couldn’t go back there.

So, for a long time, I just felt closed off and careful and scared. This was grief (the noun). Grief can take any form — anger, sorrow, numbness, depression, anxiety, a sense of unreality, etc.

My grief was mixed up with the judgements I’d internalized based on what people said when they were upset with me. I didn’t believe I could connect with anyone or open up to anyone because I thought I was a horrible, selfish person — that’s what my friends told me when they ended our friendships — and that if I revealed any of my true feelings, people would be disgusted and angry and see me for the monster I was, and they would leave me, too. And because I couldn’t grieve, I couldn’t feel Gadget. And because I couldn’t feel him, I couldn’t grieve him.

And now, things are different. They are changing. One big difference is that I’m not dying anymore; I’m less ill than I was. I also am not experiencing mental illness anymore, which is a tremendous relief, as it felt horrible to be in so much psychological pain and to not be able to trust myself or my perceptions.

The other thing that has changed is that I’ve been studying NVC. It’s hard to describe just what a huge impact this has had on my life. I started taking classes by telephone, taught by and for people with chronic illnesses and disabilities, about a year-and-a-half ago, though it feels longer. The biggest gift, at first, was that I had friends again. I was part of a community, and I wasn’t a freak or “too needy.” Everyone in my classes had really tough lives; many of them were in worse situations than me. I often felt helpless and heartsick at what they were going through, but I also appreciated that I had something to offer, that just being a supportive presence was something. It felt good to be contributing to other people again. Also, I was shocked to discover that people seemed to like me. For quite a while I thought I was hoodwinking them into thinking I was a nice person. Eventually I started to think I might not be the monster I thought I was.

Then, as I practiced NVC more, I started learning how to apply it to myself and others. NVC is about empathy and compassion. It’s about learning to recognize judgements of ourselves or others and how to translate those judgements into an understanding of ours’ or others’ feelings and needs. I started to realize just how much I judged myself — all day, every day. I started to be able to give myself compassion. I started to be able to accept others’ compassion for me. Very, very slowly, I have been able to communicate better with the people in my life, to be less triggered, to take things less personally.

A turning point came for me on October 2, 2011. There was a 50-hour-long NVC empathy phone call. It was international, in celebration of Gandhi’s birthday. I would call in and mostly listen for a couple of hours here or there, but I felt a need building in me to be heard, to express the grief that was rising up in me. Eventually, I felt like I could hardly breathe for choking it down.

I asked for empathy from these people who were strangers, from all over the world. I was terrified of doing it, and yet I knew I needed to do it. It was a very vulnerable experience. I felt scared and naked and anxious. I was afraid they would all be disgusted by my neediness, that they would see me as selfish and pathetic. But I was desperate to share my grief.

I started talking about Norm and Gadget, and I cried and cried and cried. People made empathy guesses. People gave me support. Nobody judged me. Everyone was grateful to me. They thanked me for sharing myself with them. They thanked me for my vulnerability and authenticity. They were moved. Supporting me had met needs for them. I couldn’t believe this. I had to ask the facilitator, “Why?” How? How could my outpouring of pain possibly feel good or useful to anyone else? I don’t remember what she said, but I remember that I believed her. Through this haze of pain, although I can’t remember most of what I said, and even less of what was said to me, I felt like I was being given a second chance at life.

It was so hard to believe that I gave anything to anyone that night, and yet, everyone was being honest. Rather embarrassingly, I keep “running into” people on NVC teleclasses who remembered me from that night. Some people have told me that it was the session that touched them the most.

I have to believe them, because one of the aspects of NVC I love the most is the honesty. I have not run into any game playing. People say what they feel or need, even if it might be awkward or not in line with cultural norms of politeness, but in a way that is compassionate toward themselves and others. They are not being mean; they care about others’ feelings, but they recognize that their needs and feelings are nobody else’s responsibility. There is no blame. It’s like the anti-guilt trip.

That call was life-changing. I felt like a hundred pounds had been lifted off my shoulders. I knew I needed more of that. The opportunity to grieve in community.

That hour of sobbing my heart out to a big group of strangers has had a big ripple effect in my life. I finally believed I was on the road to grieving — the verb. To not just be mired in grief, but to take an active role in my grieving. It hasn’t been smooth or clear or easy. A lot of the time I still get stuck and shut down. It’s taken me quite a while to learn how to grieve, and I’m just beginning. I have so many things to grieve, it will probably take many years before I have touched it all.

For now, most of the grief that’s coming up is for Gadget and Norm. I am hardly ever able to grieve by myself. The exception is occasionally when I’m writing a blog post like this one, feelings will come up as certain realizations hit me when I type them. Mostly, however, I grieve with other NVC people. That feels safest to me. That is where I can express my sorrow and have it welcomed and held with tenderness. I get empathy and do not get judgements — no “shoulds” or suggestions or advice. Just deep listening and connection. And then, when I get off the phone, after crying my heart out, I feel good. I feel lighter.

I sometimes feel happy again. Not just okay, but happy. I had forgotten what it felt like. At the check-in for an NVC class a few months ago, we always give a feeling and a need we’re having in that moment. I was groping around for the feeling I was having: Peaceful? No. Calm? No. I couldn’t put my finger on it. It was . . . not unhappy. Then I realized, I was happy! I felt almost guilty announcing that!

This is one of those counterintuitive things I keep having to learn over and over again, all my life. To get to the joy, I have to go through the grief. After sobbing my guts out, I’ll be able to laugh.

I have not yet learned how to grieve by myself. I think I need to keep being in the safe space of other empathic people who welcome my grief to feel safe enough to be that emotionally raw. I am afraid of grieving by myself, because I know that abyss is potentially there, and I could fall in. With others, I feel held. I can let the wound bleed, but I don’t have to worry that I will bleed until there is no life left in me. I can just let the wound of grief be cleansed by the outpouring and let the scar grow back over it and feel a little bit more healed.

I celebrate that I am able to grieve, that I am able to connect with my feelings about Norm and Gadget — not just cardboard cutouts of feelings I imagine I should have. I celebrate that there are people in my life who are not just willing, but eager, to take these journeys into my heart with me. I celebrate that I am able to feel a fuller range of emotions now — joy and laughter and hope, along with sorrow and grief.

I think our culture is not comfortable with grief. It’s messy and unpredictable and raw. We don’t know how to “fix it,” so we try to shush it away. But really, it is a way to celebrate life — that we are still here to grieve. That we suffer is part of being human. So please, congratulate me — I’m grieving.

– Sharon, the muse of Gadget (very much alive in me as I wrote this), and Barnum, sweetest SDiT

P.S. If you are a person with a chronic illness or disability who might be interested in an introductory class on NVC by telephone, Marlena, my teacher, has spaces available. Contact information and a basic description of the class are here, although the dates and times are wrong. (This is an old listing.)

Insomnia and Creativity and Neuroatypy

I haven’t slept since yesterday afternoon. Before that, I slept for two hours, from 2:00 AM to 4:00 AM. Before that, I slept from . . . well, I can’t remember. I can’t keep track of which days are which anymore, even worse than normal, because if I don’t sleep on Sunday until 6:00 AM Monday, does that count for Sunday’s sleep or Monday’s?

I’ve had a range of sleep disorders since I first was chemically injured in 1995. In fact, when I was falling ill, I remember having terrible nightmares, every night, and I didn’t know why. Then, as the CFIDS/ME and MCS got worse, I slept less and less until I was sleeping literally no hours per night. Thank god, a doctor gave me Elavil and that worked.

Over time, I had to raise the dose, but it helped a lot with sleep and with body pain, as I discovered the few times I had to go off it. And I’ve added other things that help a little. And I’ve tried everything that’s been available for sleep and most of them, I have one of two reactions: 1.  No reaction. As if I’ve taken a sip of water. I can take twice the normal dose and feel nothing. I’m wide awake!  2. A paradoxical reaction. This is when you take, for example, Valium, and your body’s response is shaking, sweating, anxiety, racing thoughts, pounding heart. Well, you get the picture. Not sleep-inducing.

I’ve been on a vampire-ish schedule for many years. It’s common in people with CFIDS/ME — we don’t “do” morning. But after getting chronic Lyme disease and coinfections, it’s gotten worse and worse. Lately, my body seems to have written a contract which I don’t remember signing that if I fall asleep before 5:00 AM, I will sleep, at most two or three hours, and then I will be awake for another twenty-two or so.

Sadly, the less sleep I get, the more pain I’m in. The more pain I’m in, the more exhausted. The more exhausted, the more shaky, mobility-impaired, voice-impaired I am. And all this isn’t even touching on the cognitive impairment: the brain damage from the carbon monoxide poisoning. The brain and neurological damage from Lyme and babesia and Bartonella. These days, I can’t read. Not only can I not read books, I can’t even read long emails. I can’t remember words I used to know. I keep wanting — desperately, desperately wanting — to blog about how torturous it is to be a writer who is brain injured and can’t read and can’t even explain why I can’t read. Can’t explain why my cognitive impairment has gotten so much worse. For a year, I’ve started draft posts here and at my writing blog, about my cognitive impairment and how it affects my writing, and I never finish them.

And what makes the level of illness and dysfunction and cognitive impairment I’ve been dealing with even worse is that I now have the desire to write again, to be creative again, which Lyme stole from me for a few  years, but I can’t access my creativity. That spark. The place where leaps happen in poetry or fiction. In world-building. In taking risks.

Instead, I follow this bludgeoning, insistent mundanity, of persuasive arguments about disability rights or descriptions of training regimes — essentially, “What I did (with Barnum) today.” And I wonder where the other part of me has gone, and if it will come back.

One thing I have noticed: Often, when I do my best writing — my most risk-taking, creative writing — is when I am really sick, and often in the middle of the night. But it’s a certain kind of sick. Like, a certain migraine state, if I can write through it, can produce good work. A certain level of disconnection from my body required by, or a result of, pain and exhaustion and cognitive strangeness.

These are usually short pieces, because I’m too sick to write anything long, and if I do attempt something long and don’t finish it, when I go back to work on it in my “normal state,” I can’t recapture the spark. It just sits there, unfinished. I have possibly hundreds of such pieces.

But, if I’m too sick — if I’m really, really sick — I can’t write at all, and I don’t want to write at all. I have no creativity. I don’t care about anything except the amount of pain I’m in and just trying to do as little as possible — not to breathe or swallow or shift in bed — to get through it. I have no leaping thoughts. I have no desire.

Then, a couple of weeks ago, I read a great article in Scientific American called The Unleashed Mind: Why Creative People Are Eccentric. I’ve never considered myself exceptionally creative nor exceptionally eccentric. I think I’d score above average on creativity and possibly a bit on eccentricity, but nothing like the examples they gave. However, most of the focus of their research was that the connection between creativity and eccentricity is people who tend not to filter out a lot of sensory stimuli and other information that we mostly consider “background noise.”

To me, this fit with the state I’m in sometimes when I’m sick enough — especially when something neurological is going on, like a migraine, which is believed to be a form of slow seizure, that that shifts my thinking. And it fits why I haven’t been having these spells of creativity — because now, when I’m sick, I’m too sick to write. And my brain is too impaired most of the time to have that plasticity to leap when there are opportunities. It’s filtering out too much. Not just what normal brains filter out, but additional stuff — words, memories, concepts.

And then, the bout of really extensive insomnia. It’s coming up on 24 hours since I’ve slept. And I entered two flash fiction contests today. I haven’t done any creative writing for many months, and now, when I literally almost fell over, because my legs gave out when I was transferring from chair to bed, because my muscles are so shaky from exhaustion, I could slip into that place where I could let go, and my thoughts took me places.

Are they GOOD places? Is the writing interesting or worthwhile or actually creative? I have no idea. I’m too exhausted to have any clue. But I did it, and that’s something. And it will probably have to be something I remember for a good, long while, because when I crash at the bottom of this crash, it’s going to be a severe, severe crash. I can feel it in the way  my body is locking up. So I have a certain desperation to get this post out before it does.

If you want to read what I wrote today, I entered the #TuesdayTales contest at GlitterWord, over which you have no control of the outcome. And I entered my original and favorite, #FiveMinuteFiction — and I’m a finalist! So, you can actually vote for me, if you want to.

And now I will go to sleep. I don’t know when you’ll hear from me again, but maybe there’ll be a leap somewhere between here and there.

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

What’s in a Name? Lymie, yes. Canary, yes. CFIDSer, yes. Patient, no.

The Patients for a Moment (PFAM) blog carnival goes up this Wednesday (gulp — tomorrow!). This was my call for entries. The submissions so far have been fascinating. You can look forward to a great carnival!

Green and white rectangular badge. On top, "Patients" is written in all capital letters, in Times New Roman font in white on a kelly-green background. Below, on a white background, "for a moment" is written in green, slanted up from lower left to upper right, in a more casual, slightly scrawled font.

Are You a "Patient"?

The “P” Word

Meanwhile, here is my post on the topic I picked (and why I picked it).

PFAM — which has been occurring twice a month for over two years — was my introduction to blog carnivals. The first time I saw the term, “blog carnival,” was in a call for submissions for PFAM. I immediately found out what a blog carnival was and determined to get involved in PFAM. I have written posts for PFAM a couple of times, but I didn’t contribute nearly as often as I’d intended, and until now, I never volunteered to host. This is in contrast to the disability blog carnival, the ChronicBabe carnival, and especially the Assistance Dog Blog Carnival, the latter of which I founded.

Some of my difficulty with PFAM definitely stems from its structure — the tight deadlines* and the requirement of answering a specific question don’t gel well with my physical and cognitive limitations. However, given how often PFAM occurs, how much I enjoy blog carnivals, and the fact that PFAM is a chronic illness carnival, I thought to myself, “What is holding me back from getting more involved with this community?” The reason was staring me in the face: I don’t identify myself as a “patient.”

“Patients” isn’t just the first word of PFAM, it’s also central to its purpose (quoting the carnival’s “about” page):

Patients For A Moment is a patient-centered blog carnival – for, by, or about patients. . . . The goal of the carnival is to “build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.”

The actual goals and membership of the carnival are quite sympatico with my interests — “build[ing] connections within the community of people who blog about illness, disease, and disability” — and I am familiar with several of PFAM’s contributors. But I couldn’t see my way clear to hosting the carnival unless my topic was to question the use of the term, “patient,” itself.

Some might find my focus on that single word, “patient,” to be nitpicking. Yes, I’m a writer. Yes, words are important to me, but my feelings about being called a “patient” go beyond semantics. I have a visceral reaction, bordering on revulsion, at hearing myself described this way.

To me, the only accurate or appropriate use of “patient” is situational. It is either relational — the person who is one half of the doctor-patient dyad — or it is locational — the person who is in a medical environment (usually a hospital) — receiving care, undergoing tests, or consulting specialists.

However, just as often as I read or hear “patient” used in one of these appropriate contexts, I also see it used as a generic term for a person with a chronic illness, condition, or disability. How I react to this usage is determined by who is using it, and how. Specifically, it makes a difference to me if it’s a mainstream/”nondisabled” person or form of media using it, versus when someone with the disability in question is using it about themselves.

When the Nondisabled World Calls Me a “Patient”

My reaction to nondisabled/healthy people referring to me as a patient is relatively clear-cut. I don’t like it. Almost every magazine, newspaper, or TV program referring to someone with a chronic illness will refer to them as “patients” — if we’re lucky. Usually, along with references to patients, we are also “struck with,” “afflicted with,” or “the victim of” our disease. That last one really highlights the problem with this kind of language: to be a victim means to have been attacked and helpless, as if the disease has some sort of malicious intent, and we have lost all power and control. Such language supports a perception of people with disabling chronic illnesses as pathetic and different. We are not just regular people, living our lives; instead, we have been singled out for attack, poor things. I am one of a massive movement that has been trying to get writers and journalists to use “person first language” for over two decades, with little success.

“Patient” may not technically carry the same weight as “afflicted,” but its usage, its social weight, puts it in the same category as this more obvious “victim” language. To be a patient is to be medicalized and stripped of our identity as people who exist and act outside of medical settings. When I’m blogging about disability or training my service dog or having a phone conversation using a TTY, all of these activities are influenced by my having a disability, but none of them have anything to do with my being a patient. I am not getting medical care as I sit here and type this. I am living my life.

Even when, last night, I used my PICC line — a medical device that was inserted into my arm in an operating room — to infuse an antibiotic prescribed by a doctor, I was not a “patient.” I was and am a person living with Lyme disease, managing and treating my disease. I can blog, eat, train my dog, follow Twitter, watch a movie, and/or talk on the phone while I infuse. I am acting, not being acted upon.

However, when the visiting nurse comes tomorrow to change my dressing, I will be her patient for the half-hour or hour she is here. She will be doing to me — flushing my line, cleaning my arm, putting on a new dressing, asking me questions about my symptoms and functioning — but once she is gone, it’s just me in my home.

I am not the patient, however, of my personal care assistants (PCAs). I decide what needs doing and how it will be done. They are my assistants, not my nurses; therefore, even when they are assisting me to do what I can’t do for myself, I am not their patient or their client. I am their employer.

When People with Chronic Illness Use “Patient”

My feelings are less straightforward when I read articles, posts, fliers, etc., by people with my conditions who refer to themselves/us as “patients.” There are two main reasons why they use this term. One reason is the same reason that journalists do — it’s convenient. Saying “Lyme patients” is much shorter and less awkward than saying “people with Lyme disease.” It’s often used as a way to distinguish the person with the illness from others who might be concerned with the issue, such as “families,” “caregivers,” and “healthcare providers.”

However, there’s another issue at stake for those with my disabilities, in particular. Myalgic encephalopathy (ME), multiple chemical sensitivity (MCS), and Lyme disease all have histories of being treated as “not real” illnesses. We are told that our symptoms are psychosomatic. We are told the illness is a product of our personality or lifestyle. We are told there is no such thing as ME, MCS, or chronic Lyme, and the labels for these diseases carry these messages.

Our diseases are given mocking, belittling names: “Yuppie flu” or “chronic fatigue syndrome” for ME/CFIDS, as if the only symptom of ME/CFIDS is “fatigue.” The chemical industry’s name for MCS is “idiopathic environmental intolerance,” putting the emphasis on the first word — idiopathic — which means “of unknown origin” and removing “chemical” from the name altogether! The Infectious Disease Society of America, which has been prosecuted for conflict of interest in its relationship with the insurance industry, denies that chronic Lyme disease — persistent infection by the bacteria and parasites that cause tick-borne disease — even exists. Instead, anyone who is still sick after a month of Lyme “treatment” is said to have “post-Lyme syndrome,” a psychological response to illness.

In other words, words matter. I didn’t need a study to prove it, but there is one. Several years ago, a study about the impact of the name of CFIDS/ME was conducted. A mixed group of fourth-year medical students and medical residents were each given a case study of someone with ME/CFIDS, including symptoms, history, etc. They were randomly divided into three groups. All got the same case study, but the name of the disease was different for each group. One-third of the participants’ patient was diagnosed with “myalgic encephalopathy/ME,” one-third with “Florence Nightingale disease/FN,” and one-third with “chronic fatigue syndrome/CFS.” Those who received “FN” or “ME” cases believed the severity of the patient’s illness was greater than those who had the “CFS” case study. Further, 67 percent of those with the “CFS” study recommended psychiatric treatment for the patient, versus 53 and 48 percent for FN or ME, respectively.

I didn’t need a study to tell me that the name of my disabling condition is insulting and misleading, because I’ve lived with that perception since 1995. I have likewise lived with doctors and lay people discounting my MCS as psychosomatic, as a form of “hysteria” or paranoia. Again, this didn’t happen in a vacuum. The chemical industry has been actively working to discredit the experiences of people with MCS — often in partnership with federal agencies and the military — for a very long time. They have money on their side.

Then, I got Lyme disease, which I had previously thought was not a “controversial” illness. Once again, money has changed the perception of how this disease is perceived and treated — and therefore how I was perceived and treated (or left untreated). As in the other cases, the name of the disease, “chronic Lyme,” has been dismissed.

Given how much people with my conditions have been derided, denied, and denigrated, it is not surprising that most of the individuals and organizations who advocate for us — who try to raise awareness about the validity and seriousness of our diseases — focus on the potential severity of symptoms and systemic injury, and the medical proof of our illnesses — the brain scans, blood tests, or other objective measures of living with an organic disease. Almost without exception, those who do this work refer to us as “patients” — Lyme patients, ME patients, CFIDS patients.

One exception is advocacy groups and organizations for people with MCS. Some do use the term, “patient,” particularly those in the medical and scientific fields who are concerned with chemical injury and MCS. However, because most with MCS view our condition as having been caused by being poisoned or chemically injured, and our symptoms as the more severe manifestations of poisoning that everyone would have if the dose was sufficient, not all with MCS even consider ourselves “sick.” For many, it is the rest of the world that is poisonous, and we are just the canaries in the coal mine. Others do identify as ill, as patients.

So, when I see “ME patient” or “Lyme patient” on an educational or activist website or blog, I do cringe, but I don’t blame the person who penned the phrase. I think it feeds a need for many of my community to have our real sufferings — particularly our mistreatment at the hands of the medical profession — acknowledged.

Lymie, Canary, PWC

I much prefer, however, the lingo we have developed among ourselves. As with any subculture, we have created our own “in-speak,” which says more — and yet uses fewer words — than the awkward language of the professionals and the pitying, patronizing, or disputing public.

When I first got sick, the terms most used in the MCS and CFIDS/ME community were “EIs” for those with environmental illness, and PWC, which — adopted from the AIDS community’s use of PWA — meant “person with CFIDS.” Over time, those with MCS have mostly switched to calling ourselves canaries or MCSers. “PWC” has fallen out of use, but I don’t know of any neat replacement; sometimes it’s CFIDSer or CFSer or simply “ME.” (As in, “I’m an ME.”) In the Lyme community, there is consensus — we have the delightfully short, descriptive, and playful, “Lymie.” (One Lymie, two Lymies.)

None of this even gets into how I navigate the broader disability community — particularly the disability rights movement arm — using words like “sick,” “ill,” and “disabled,” interchangeably to describe myself. That does not always go over well, let me tell you!

But you all have been patient to read this long, dense post, so before you get sick of the topic, I will end, because five other people with chronic illness (who may or may not identify as patients) will be chiming in on this discussion tomorrow!

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

*Starting in 2012, PFAM will move to a monthly schedule, which will make it slightly more doable for me. However, hosts will still be required to give only 10 to 14 days’ notice for bloggers to write and submit a post on that month’s topic. Lead time is my real stumbling block.

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