What & How I’m Doing (Am I Still Recovered? Yes)

A lot of people have asked me, “How did you recover?!”

Now that I’ve answered that for a fair number of people in my acquaintance, more people are asking me, “How are you NOW?”

I think some people are curious about what one does with one’s life after almost 20 years of mostly being in bed, often unable to care for one’s self!

Some may also be wondering whether the recovery has “stuck,” or whether it was just some flukey thing that has reverted. And some are friends who just want to know what I’m up to, I think. Here, without further ado, is what and how I’m doing.

How Am I Doing?

Sharon sitting at outdoor black metal restaurant table. There is a window behind her with a reflection of Amherst brick buildings in it. She is wearing a black T-shirt that says "I [red symbol of a clicker] DOGS." Across from her is a thin woman with short, white hair and a blue scarf around her neck. Both are smiling. On the table are two white paper cups and two plates. One has a piece of chocolate cake. The other has an eclair.

Eating dessert out with my friend and fellow recoveree, Forest (who has a text and video DNRS testimonial)

Great! Yes, I am still recovered! The only physical challenge anymore is that my feet are still adjusting to all this standing and walking after many years of not standing or walking. And even that is pretty minor at this point.

I have no CFIDS/ME symptoms anymore. I don’t think I have any Lyme symptoms anymore. (I’m working on another post on Lyme and neuroplasticity. I’ll say more in that post.) Every once in a while, I have a fleeting “MCS” symptom, usually when I’m experiencing symptoms of withdrawal from Klonopin, and then I do some brain retraining or something else antithetical to having symptoms, and it goes away. (The other night I got migraine aura, so I danced to Zoot Suit Riot for a few songs, and then I was fine).

As to what I am doing, how about if I take you through a typical week?

What I’m Doing

Exercise: Swimming, Yoga, Walking

Exercise was an important part of my recovery, and it’s an important part of my continuing physical and mental wellness. As I posted recently, exercise has been an essential component to coping with withdrawal from Klonopin. It’s also fun!

Twice a week, I got to the YMCA and swim about a mile, which takes me about 50 minutes. That is 1800 yards or 36 laps of a 25-yard pool. Sometimes I do 37 or 38 laps or whatever. I have a swim iPod that I’m very fond of, and I listen to Sarah McLaughlin or Two Nice Girls and do backstroke, breaststroke, or freestyle. (Backstroke is my favorite.) I love swimming. I grew up spending as much time in the water as I could, and I’m delighted to get back to that. I always feel wonderful when I’m climbing out of the pool.

Twice a week, I go to a yoga class. I am incredibly fortunate that my little town has awesome yoga classes at the library. The class is different every time. Sometimes it’s physically demanding and sometimes it’s gentle. Our yoga teacher is very funny and lively. She keeps us focused and entertained. I usually feel like melting butter by the end. Yoga is so fantastic. I am a complete yoga convert.

Every day (except for rare occasions when it’s raining hard or I’m super busy), I take Barnum for a walk. Usually we walk around a nearby pond (off leash), which is a little under a mile, and gorgeous, with swampy parts and hills and knotty tree roots and bridges over streams and big pine trees and wintergreen growing along the path that I pick and chew on. It’s lovely.

Sharon stands smiling on a dirt path with grass and very leafy trees and shrubs behind her. Next to her is a thin woman in a brown vest and jeans, smiling at Barnum. Barnum sits in front of Sharon, facing her, so his back is to the camera. He is wearing a red harness.

Barnum and me at the pond, with my friend Irene

Sometimes we do longer or shorter. Last week, we did three miles two days in a row because I had nothing I was hurrying to get to or from, which is unusual. The route we took was one of the dirt roads near my house (which is also on a dirt road), taking us past a heard of Scottish Highland cattle, which are big, furry cattle that are very friendly and interesting.

Large bull with very long, shaggy, reddish-honey colored coat. It has big horns that come straight out the side of the head and then make a right angle and go up a short amount.

Moo (but with a Scottish accent)

Six miles in two days turned out to be too much for my feet. I have had a flare of plantar fasciitis again and another fibroma on the sole of my right foot, so now I know not to suddenly put a lot of extra stress on my feet for a while. I am going to stick to a mile a day for the next week or two.

Neuroplasticity Coaching

I have been doing neuroplasticity coaching by phone. Since May, I have had between one and five coaching sessions per week. I do this on the two or three days a week that I’m not at my dog training internships. So far most people are either doing DNRS and want some help with implementing it (including adjusting other parts of their lives to allow them to work on it) or want to know whether I think DNRS (or another neuroplasticity program) would be right for them.

I really love coaching. When I am supporting someone with recovery, and they take the ball and run with it, it’s very satisfying. Providing support so someone feels better or more hopeful is also incredibly rewarding. The time I spend on the phone is dwarfed by the time I spend after and between sessions, sending emails about what we discussed, providing details of how to do what we talked about, and researching and answering questions.

I also spend a lot of time reading. I am rereading some of my favorite neuroplasticity books (and slowly buying them so I can underline things and dog-ear the pages) and also doing a lot of reading for my internships (see below). I also read articles online on neuroplasticity-related topics. I try to send tips emails to my neuroplasticity email list, but lately I haven’t had enough time.

A new neuroplasticity coaching project has been designing a program for my mom to improve her balance. I decided a few months ago that I wanted to do this for a few reasons. One is because my own balance has been a constant work in progress since I started walking again. Overall, my strength and agility have improved a lot — and my balance has improved tremendously, too — but I think balance and proprioception are the main physical skills I need to continue to work on. So, I have a lot of personal experience to bring to this topic.

Another reason I wanted to do this is that my mom has fallen and injured herself several times in the last few years, and since I have worked so hard on regaining my own balance, I want to share that with her and help her be more stable and healthy, too. I want her to feel strong and confident as she moves through the world. I am typing this from my parents’ home, in fact. I’m spending four days with her, working intensively on balance issues. Barnum has come along for the trip, too.

Another reason I’ve been excited about coming up with a balance plan is that I know balance and falling are issues for a lot of older people — including some other people I know — so I am using my mom as a guinea pig to see what works so that I can hopefully come up with a protocol that other people can use, too. Before I came, I researched and thought a lot about what goes into balance. We started with an assessment because balance is made up of many components: visual, vestibular, proprioception (mostly sensiromotor of lower extremities — in other words, information from the feet and ankles), as well as muscular/strength and mental components.

After assessment, I decided to focus on reaction time, sensorimotor/proprioception of lower extremities, mindfulness, relaxation, abdominal strength, and mechanics of walking. So, that’s what we’ve been working while I’m here.

Sharon has one leg slightly raised while she stands on a bridge that is about six boards wide, covered in a thin layer of snow over a small stream. There are tree trunks on the bank on either side behind her and the forest behind that.

Here I am working on my own balance six months ago

Dog (and Cat) Training Internships

I am interning with two trainers. I am assisting Caryl-Rose Pofcher, who does the dog training classes for Dakin Humane Society. When I started, I was assisting one evening a week with two classes. Then, another assistant was busy for Saturday mornings, so I was assisting with two classes twice a week. We have had a break for the month of July because Caryl-Rose has been away part of the time, and then I will start assisting one evening a week again in August.

I love assisting these classes! I am learning a lot and finding it very rewarding. I’m learning a variety of ways to train familiar behaviors and how to work with a large variety of dogs with different temperaments, learning styles, and also different breeds and sizes of dog. (Little dogs require different body placement and posture sometimes.)

I also learn a lot from watching and listening to Caryl-Rose teach because every teacher has a different patter, and I find it helpful to observe what seems to connect with students and nifty ways of explaining things. Caryl-Rose has also started to have me demo a new behavior each class, which is good preparation for learning how to demo and teach when I run my own classes in the future. I think one of the most challenging things she (and other dog training teachers) have to do is handle a dog while at the same time describing what she’s doing and then explaining how it relates to the larger concepts of what she’s teaching.

I help set up before class (put out chairs and water bowls, take out supplies, talk with the teacher about what we’re doing), and then during the class I help refocus dogs, answer questions, offer suggestions, model desirable behaviors, and help dogs who are over-the-top stay focused in a positive way so their owners can pay attention to the teacher. After classes, I help with clean up or transition into the next class.

My other internship is with Elise Gouge of Pet Behavior Consulting. She mostly does individual consulting for behavioral problems with dogs. These are often aggression cases (toward people or other dogs), but she also deals with separation anxiety, resource guarding, thunder phobia, and other issues. She also works with cats who have behavioral problems.

This has been a terrific source of learning because most of my dogs have not had significant behavioral problems, so I had very little knowledge of a holistic way to approach major behavior issues. Once a week, I go with Elise to her appointments — either behavioral consultations or training programs — in people’s homes. I observe the appointment, and afterward we discuss it in the car as we drive to the next appointment.

I also do barter for Elise once a week. I go to her house and help take care of boarding dogs while she’s out and other help with maintaining the business, such as poop scooping, cleaning crates, stuffing Kongs, filing client intake forms, entering checks in an accounting database, and similar stuff.

I am also following a curriculum Elise designed. There is one new subject each month, with several books to read for each block and an essay-type homework question each week, some of which are based on what I observe during lessons and consultations. The first block was learning theory, which I felt pretty solid on already, but it was a very helpful review; applying the concepts to a wide range of dogs and behavior issues has helped me get more solid on it. Now I am on canine ethology and body language, which I thought I already had a pretty good foundation for, but I have learned a ton. I have also learned some about cat behavior and body language lately.

Speaking of cat behavior, I recently fostered a feral kitten for Dakin Humane Society. I have always wanted to foster animals, and now I have the opportunity! Betsy and I decided that feral kittens would be the best fit for our household. Kittens generally need medical support (force feeding and subcutaneous fluids, and sometimes medication) as well as socialization. They start out in a large dog crate — which I kept in my bathroom — and when they’re doing better, they get the run of the bathroom. Eventually, if I get Barnum and future kittens up to that point, I might let kittens have more run of the house. I had the first kitten for 11 days, and Barnum was deciding whether she was prey or not at the end, which was an improvement over him being certain she was prey earlier in her stay.

For the kittens, what they mostly want is physical affection, not food. Later, the main positive reinforcer is play, so it is a good way for me to learn to use different reinforcers for desensitization and counterconditioning. With the kitten I just had here, once she was comfortable with handling, I counterconditioned things like my feet moving and desensitized her to the radio, the dishwasher, the stove, etc., and also worked with her on calmly accepting handling even when aroused. (I would play with her and then pick her up and pet her briefly and then return her to playing).

Also, I applied to Karen Pryor Academy last week. I am hoping to take the Dog Trainer Professional Program six-month course at the end of this year. I have my interview tomorrow. After I have graduated from KPA, I’ll have their certification (assuming I pass with 90 percent or better). I also plan to go to the Association of Professional Dog Trainers (APDT) conference in October and hope to take their certification test by the end of 2014 or early 2015. And THEN my hope is to do a variety of dog training things, but what I am most hoping to do is create a course for people with disabilities who want to train their own service dogs. I think this would be a way for people to get information on laws, acceptable behavior and public access training standards for service dogs, as well as to receive coaching in how to train and access peer support from others who are doing owner-training.

Taking Care of Barnum

Having a dog can be a lot of work for anyone, but having a large dog who used to be a service dog and has several major medical problems turns out to be quite a bit of work (and money). As I mentioned above, I take Barnum for a walk every day, usually about a mile, and that is sometimes one of the more challenging activities, depending on how my feet are doing and where and how long we walk. Usually we’re walking on a dirt road or in the woods, so that’s pretty gentle on my feet. I do love taking him for walks. It’s very enjoyable to see him so happy and free, and it’s so beautiful where I live. Also, we go on different routes that allow me to explore different parts of the area where I live.

We are doing training as it’s convenient. On walks, I have mostly been working on his recall and “leave it,” because we do off-leash walks most of the time. That is going really well, and I hope to write a post soonishly about “hamburger recalls,” a trick I learned from Kathy Sdao‘s book, Plenty in Life Is Free.

One of the reasons that training has been challenging is that Barnum has food allergies to practically everything that is easy to use for training. Some of you might remember that we were dealing with a very severe and persistent ear infection. Well, that ear infection lingered for a year-and-a-half!

After many rounds of antibiotics and ointments and trips to the vet, we saw a dermatologist who believed the chronic ear infection was caused by food allergies. We did an eight-week elimination diet of only ostrich and quinoa, during which his ear infection, itchiness, vomiting, and diarrhea went away. I had already figured out that he is very allergic to chicken, which ruled out turkey and duck (they cross-react with chicken), and discovered he’s also allergic to beef and pork! So, now he is eating ostrich, quinoa, sweet potato and fish oil. The only treat I’ve found that he can tolerate is freeze-dried rabbit, but it’s expensive and hard to find, so I also make a lot of sweet potato treats and ostrich burgers as treats. We have an appointment with a nutritionist coming up to make sure that he’s getting everything he needs in this limited diet. She’ll probably put him on a vitamin supplement.

Sharon sits cross-legged on the floor. Barnum stands in front of her and kisses her on the chin. Sharon has her head tilted back and is smiling, with eyes shut, leaning away from the tongue. Barnum has curly, fluffy black hair.

But he’s worth it!

We also have a follow-up with Barnum’s dentist next month. Some of you might remember that Barnum has a lot of dental issues due to his malocclusion — his lower jaw is too narrow and too short for his upper jaw. So, in addition to brushing his teeth every day, he also has a chronic infection on his lower lips that I am cleaning and treating and trying to find a solution for. This problem is also from the malocclusion — because the lower jaw is underdeveloped, he has skin folds that stay wet all the time, and that causes the infection.

Between cooking him quinoa and sweet potato and ordering ostrich online and then mixing up batches of it or making into into treats, taking him for walks, taking him to the vet, brushing his teeth, giving him medication (thyroid pills and antibiotic ointment), and keeping his lower lip clean, Barnum is a heckuva lot of work!

I am hoping to start obedience or other classes with him in August, as well. This will partly be for fun for both of us and partly be for my own professional development. I am hoping to get some titles on him eventually so I can learn what that is like in order to be able to help teach it.

Celebrate My “Re-Birthday” with Me?

I consider August 8 to be my “rebirthday.” That’s because on August 8, 2013, I started watching the DNRS  (Dynamic Neural Retraining System) DVDs, launching my recovery and rehabilitation journey!

I am planning on celebrating my recovery rebirthday with a barbecue and a bunch of friends. I would also like to support other people in recovering. So, I am going to do a giveaway of at least one set of DNRS DVDs to one person who has difficulty affording them on their own. I will also give away a free coaching session to anyone who wants to work on neuroplasticity. I’ll post more info about these giveaways in an upcoming blog post.

Meanwhile, if you would like to support this giveaway, we might be able to give away more than one set of DVDs! A set costs $250 plus about $20 shipping from Canada. I would love some help paying that $270. And if enough money can be raised, I could buy two or more sets to give away!

If you would like to donate toward the DNRS giveaway — no amount is too big or too small, whether it is $1 or $5 or $100 or $1000! — please use the “Tip Jar” on the right side of my website homepage. Or, if you do not want to use Paypal, you can send me a check or hand me cash in person. Please email me if you want my mailing address. Thank you!


What & How I’m Doing (Am I Still Recovered? Yes) — 7 Comments

  1. WOW. No, seriously, I can’t think of anything profound to say. Just, WOW! Amazing! I’m very interested in the Lyme and neuroplasticity post, although I don’t think I’ve been treating long enough to think about that. But at some point, hopefully. And congratulations! I am in the first section of the tunnel you have just exited, reading “Cure Unknown” and starting azithromycin. It’s great to see someone get out of the tunnel!

  2. Sharon, Thank you for taking the time to post these updates. Your passion and vibrancy come through beautifully.

    What you have to share is certainly for the benefit of many. I continue to be inspired, and reading your posts helps with this momentum ~

  3. GGood Grief Girl when do you have time for all of that! Seriously though this iis truly amazing. I am so proud of you and all that you are accomplishing. I hoope Barnum is adjusting well to this new structure of life with you. Speakingg of Barnum- I noticed you said he is allergic to pork, I’m not sure if yyou are using NDT (natural dessicated thyroid- armour, etc or levothyroxine,, but most NDT I am aware of is pork based)

    Good luck with your interview for KPA Keep us posted.

    • Howdy!

      Good to hear from you as always, Karyn. Well, lately I have not been getting enough sleep, which is partly from being in withdrawal AGAIN, this time from Elavil, but also because I’m too busy to get enough sleep. I have to figure out a way around that cuz I need my sleep!

      Barnum is doing well except for his freakouts in the car on long trips. I am starting to really think this is due to motion sickness, probably triggered by the infection in his middle ear he had for so long.

      We’re not using NDT. We’re still using Levo. So far so good with his overall health….

      I got into KPA! I found out today! YAY!!!!!

  4. I am happy you are doing so well–this gives me a lot of hope, and I honestly had lost it for a while that I’d ever recover much. But I was able to work some hours this spring and have been able to be out more than I had. Hoping my son, who’s improved more than I, can both be like you. It’s amazing what all you’re doing.

    I had not heard of ostrich dog food; I have seen kangaroo and venison based. It’s nice there are so more choices available these days than when we had our first dog 20 years ago. Barnum is such a sweetie and a cutie–your pictures of him capture his personality so well.

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