Brainstorming TimeFiguring out ways to train an animal, how to problem solve training blocks, and thinking through what an animal's capabilities are and how they might be wielded to work within our world and our needs is something that both comes naturally to me and that I continue to work on, build, and learn more. It's not a way of looking at the world that's natural to most people though, and it can make it harder for a person to think through what their life is like, what's hard for them, and link it back to how a service dog might could help. Assisting people in determining tasks they may need from a service dog is a consult I offer through my business, Disabled Advantage, because it is a crucial step in planning the outline for your service dog's training. For this year's CRPS November Awareness month posts on social media, I wanted to share 30 aspects of CRPS life and link them to specific task work a service dog could be trained to perform, to help people begin to think like a trainer, see the possibilities, and start to brainstorm for their own teams. \ *The tasks listed are a mix of tasks from my team, other teams, and what could be possible based on a dog's capabilities*
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For the last 10 years, I've been putting together a puzzle of my life with CRPS. The piece that started the story, the piece of research that reveals more of this mystery disease, the piece that showed me the way to manage it, and so on. I thought I had the puzzle mostly put together, willing to accept that some pieces would never be found, when I was gut-punched again. One of the pieces that looked small actually belongs to a larger, more complicated puzzle that's been hidden away for 28 years, only now coming into the light. Pretty sure my life with CRPS is about to be turned upside down. Everything I know about how to move, how to act, how to walk, and possibly, how to work with Robbie is about to examined and potentially altered. Hopefully for the better, to move more effectively, act more effectively, walk more efficiently, and work with Robbie more efficiently as well, but change is hard. And in my case, change is painful. I can only hope that our team is strong enough to take the waves. Complex Regional Pain Syndrome, in shorthand called CRPS, is officially recognized worldwide in November every year to raise awareness about this disorder. Every year for the past few years, I've contributed to this cause on my personal Facebook page to teach friends and family more about my life with CRPS, and on Robbie's Facebook page, I've shared facts about CRPS service dogs, and suggestions on gear a team might need. This year, I'm casting a wider net and taking a slightly different approach. On Robbie's Facebook page, every day this November, I'll be posting a legal fact card with a link to the resource to help educate CRPS service dog teams on important laws, protections, public access details, and more, that they need to know to be more aware as handlers. These facts will benefit any service dog team, but my main focus is on the CRPS teams who aren't necessarily getting these lessons from a program because they had to owner-train, or are working with a trainer who may not know the ins and outs of service dog training. On my graphic design Facebook page, Country Flame Designs, I'll be sharing a fact a day, as well as resources for people with CRPS, links to other artists who have CRPS, and videos that go more in-depth on my experience living with CRPS for the past 10 years. I hope you'll be following our page in November to learn as we go, but if you missed the posts, or want them all in one place, the slideshow below is for you. Originally written for a writing contest, but didn't make the cut. No matter what anyone says, our story is worth telling and sharing. You hear it all the time, “My dog changed my life.” In my case, it’s more profound than that. My dog took me from being bedridden to going for two-mile walks. He took me from being hopeless to starting my own business. He took me from being angry and lost to being patient, confident, brave, and finding myself again after a tragedy. Our Backstories My name is Sally, and this is about my service dog Robbie. I’m fully disabled with one of the severest forms of chronic pain possible, a condition called Complex Regional Pain Syndrome. The use of service dogs for CRPS is not widely recognized, it’s very nontraditional, and Robbie and I seem to be making waves in the community. But his assistance, while nontraditional, has been the answer that no medical professional has been able to give me. Our joint strength, creative learning style, and commitment to each other are what makes us such a strong team, tackling the nontraditional together. I’d like to tell you our story: how we found each other, how we grew together, and what we’re doing now. While this blog is primarily focused on talking about my experiences with Robbie, my service dog, I feel it is important for people to understand that a service dog isn't a cure-all. Robbie is an important part of the management plan we have for my CRPS, but he isn't the whole picture. In this post, I'll be sharing all the different tools we use to manage my CRPS and how effective each is for me. service dog
I believe my partnership with Robbie can be attributed to most of the progress we've made in getting my CRPS under control. Robbie impacts my life through his task work, but in indirect ways as well. He needs exercise, so I feel obligated to exercise with him. As a result I am stronger; read more on that below. He widened my social circle, taught me how to break big things into smaller activities, how to be more patient and forgiving with myself, where to ask for help, and how to exist in a flare better. Training and partnering with a SD was a good ft for me and our lifestyle.
Exercise
Robbie needs exercise 2x a day, a minimum of 1x a day if I'm having a really bad pain day. He gets his exercise from walks, cart work, treadmill time, playing fetch in the yard, and doing jumps outside. Along with him, I go for walks, ride a stationary bike while he is on the treadmill, and do upper and lower body strengthening exercises. He needs exercise every day, no matter how I feel, so that helped me adopt a mindset of "no matter how I feel, every day I will exercise." On my worst days I ride the bike for 5 minutes. On my best days we go for a 2 mile, hour long walk. He motivates me to exercise, but it also just feels good! I get a lot of flares that are caused from lack of activity, and moving eases them. I also get flares from moving, but if I stop the pain gets worse. If I push through the pain and keep working, yeah it hurts, but I am still able to accomplish things. I maintain my ability to tolerate high pain levels by continuing to push myself when I don't feel good. I rest when I can, and take days off, but that is never my go to solution. I know that I can walk with a migraine because I have asked myself to do so. I feel like I have a better handle on what I can or can't do, because I am willing to do what I can when I can. Exercising with Robbie has made my body stronger over all. My balance is better, which means I fall down less. My stamina is better, which means I can do activities for longer. It is part him, part mindset, part work.
medication
I use prescription medication for symptom management on an as needed basis. None of my medication is taken daily, and while there are days that would be helpful, I'm ultimately okay with that. I don't like feeling out of it, or overwhelmingly drowsy or dizzy. My condition isn't kept under control by medication, though. Medication is a crisis management plan, when a flare hits so hard and so strong that I need extra help tolerating it. Or, as a way to help my relax enough to heal and tolerate the pain after a procedure or extra injury.
Vecttor Treatments
In "Adventure in Bravery," I go into more detail about an electrode based treatment we do at home called Vecttor. This treatment is a cumulative one, unlike a TENS or Biofeedback unit. It doesn't help in the moment, but it does help with recovery times, sleeping through the night, pain tolerance, stamina, and adrenaline episodes. It is easy enough to do at home, but it does require someone to help you put the electrodes on and take them off. It takes about 2 hours start to finish. The biggest improvement we've seen is that traumas, such as falling down, once took 2-3 weeks to recover from - now they take 2-3 days!
EMDR Therapy
Eye-Movement Desensitization & Reprocessing Therapy - if you haven't heard of it, and deal with trauma in your life, I recommend checking it out. I started this therapy to target the PTSD surrounding my jaw and past jaw dislocations. We're also using it to target miscellaneous extra sources of adrenaline surges for me, such as the fear of severe thunderstorms. My jaw is proving quite difficult to make progress on, because the memories are so visceral and trigger real time pain. Progress IS being made, but slowly. I can say it definitely works, though, because storms no longer trigger overwhelming adrenaline levels for me. The storms themselves still trigger pain, but thinking about them or a possible forecast for them do not suddenly trigger pain flares, which is excellent progress in my book.
diet
I have never found a direct link between eating certain foods and then having a bad flare up. I don't do any fancy diets, but I do try to give myself as healthy of a eating style as possible. I am aware that gaining weight would make it harder for me to move, it would decrease my stamina, and feeling extra of myself would trigger more pain flares from more skin overlapping. Seems odd, but that's CRPS. I work very hard to keep myself a good weight for me. Additionally, I know I have weak teeth, I know the CRPS makes dental care more difficult, and my TMJ compounded with jaw-trauma makes dental appointments very difficult pain wise and mentally. I try to limit myself to one sugary item a day, I don't drink a lot of soda, I drink water more than anything else, I snack on vegetables or fruit instead of traditional snack items. I limit myself to one crunchy item in a day so I don't trigger a jaw migraine or risk a dislocation. I try not to eat super greasy food because it causes a lot of nausea for me. I eat small portion sizes. And I exercise, every day.
rest
I do rest! I can't take naps, so that's out. My resting looks like playing a computer game for an hour or watching TV for a short time in the day. If I'm in the middle of an activity, it is better if I finish it, because it is hard to get started again later. Each week I give myself 1-2 days where I don't set a bunch of goals for myself, to let myself recuperate from the week. Sometimes resting is doing an activity that will cause a flare, but gives mental relief, like hanging out with a friend or riding a horse.
Structure
I set goals for myself each day. I follow a daily routine and do my best to stick to it. I found that I need projects to focus my day, because otherwise it is really easy to not make myself move and I collapse under the weight of the pain and fatigue symptoms. I keep to this schedule 4 days a week, and the other 3 days are open to rest or running errands. At the end of the day I am tired, and my pain is high, but I feel so much better about myself than the days where nothing got done. This helps me manage the CRPS because I'm constantly working at living my life and finding ways to improve on problems.
Support System
A support system is so important when you have CRPS. Having a friend to rant random little "ugh I dropped a cup, stupid tremors" to and other flares, failures, or triumphs in a day really does make it easier to cope. I have friends I talk to every day, people I email with sporadically, a chance to participate in a monthly chronic warrior card swap, and the people I help online through Robbie's Facebook page or this blog. All of that is meaningful to me, brings me hope, and makes living with CRPS less desolate.
teamwork & asking for help
A dog taught me how to ask for help. From there, I got braver about asking people for help. I have a team of people in my life who help with things from driving to getting chores done. Every little bit helps and prevents a flare or keeps it more in check. I couldn't do what I do each week without my support team.
doctors
I did not have much luck with the medical community. We live in a rural area, so doctors are limited. Travelling to a bigger city for medical treatment isn't practical because we've tried every treatment and none of them worked, so there isn't anything new that a big city doctor could tell me. I have a primary care doctor, a dentist, and a therapist. That is all I need. We did try pain clinics, but they were extremely unhelpful. Out of the two options available to us, one clinic would only do nerve blocks and nothing else (too expensive and low effectiveness). The other clinic wanted me to be suicidal (I wish I was kidding - I'm not).
traditional CRPS treatments
I was diagnosed too late for any of the accepted treatments to be worthwhile or helpful. I did try acupuncture, chiropractic work, physical therapy, nerve medications, desensitization therapy, cognitive behavioral therapy, mindfulness - none of it worked. Spinal Cord stimulators aren't advised for people with full body pain, so that was out. Hydrotherapy was too expensive and the only therapist in our area who did it had very outdated information on CRPS that would have hurt me worse. Nerve blocks were expensive, low success rate for full body, and not covered by my insurance. TENS units were excruciatingly painful and did not help. Meditation and mindfulness triggered far more problems and pain.
other mobility devices
Using a wheelchair where we live would be impractical and dangerous. It is better if I work to keep myself strong enough to always walk. I can't use crutches, a walker, or a cane, given how weak and painful my dominant arm continues to be. I don't wear braces for very long, unless there is a structural weakness problem. I don't want my body getting reliant on a brace.
comfort items
We do what we can to give me as much comfort as possible. Soft blankets, soft clothes, clothes that fit but aren't too tight, fuzzy socks, warm clothes so I can layer, breezy cover shirts for summer time, a comfortable mattress, and a variety of options for where to hang out in the house. Not every accommodation can be made, but where it can we try. I don't cater to the CRPS completely though. I still lay under blankets and bear the pain they might bring. I wear closed toe shoes even when it feels like my feet are buried in hot coals. I wear jeans every day, even when they prickle. I believe that while I need to be comfortable, the CRPS is gonna flare sometimes. I'm not willing to change my whole lifestyle and environment to walk on eggshells with it. There will be times when it can't be accommodated, and I need my body to not unravel and shut down in response. I also don't want to lose the ability to tolerate wearing things like jeans or closed toed shoes, because the way I want to live my life demands those tools - being outside and working with animals.
Well, there it is. My management plan for CRPS. Biggest part is definitely Robbie, but a lot of it wouldn't be possible without his helping in his capacity. What works for others didn't work for me. What works for me, may not work for others. If you are newly diagnosed with CRPS, or struggling to find a system that works for you, maybe this will give you a few ideas. I learned what to do for myself by learning from others with the condition; it's what we all do.
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My Name is Sally...I have a condition called Complex Regional Pain Syndrome. This blog is about my journey training Robbie, a dog who helped me regain independence, confidence, and achieve the impossible in the face of my disability. It continues on with the training of Austin, Robbie's successor. Check Out... - "More than a Dog" was published on a site called The Mighty Categories
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