Two hands in the sporting TIMEOUT position on a black background with the words TIMEOUT to Regroup in cream font

Time Out to Regroup

Two hands in the sport's TIMEOUT position on a black background with the words Time Out to Regroup in cream font.

If you have been following my blog, you know that my husband and I spent a wonderful time in Utah exploring several national parks during the month of October. I felt alive, grateful, and energetic. My Fibromyalgia pain showed up, but I was able to manage it with myofascial release, stretches, meditation, and my hot pad. Every few days, we scheduled rest days during our three week trip, but I was able to be unusually active and alert. I can tell you, it was a wonderful time, and I thought that maybe I had found a good balance in living life FULLY despite chronic pain.

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However, the very first week on our return (first week of November), I was noticeably out-of-sorts. I was so TIRED and in more pain than I had been in quite a while. After a full week of really feeling horrible, I decided to let my PCP know. He suggested I get a COVID-19 test due to the fact that I had been out of the state. I knew my results, negative, within two days. But the heaviness, utter exhaustion, and pain remained. Such a drastic change for the worse.

Is it the Weather?

Our drive from Utah, 70s and sunny to Michigan, 40s and rainy was definitely a stark difference. I had often read discussions among those with Fibromyalgia talking about their noticable reaction to weather changes. I hadn’t ever noticed it in myself, but to be honest, I hadn’t gone through such a stark change like this before.

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Is it Stress?

I had put off thinking about my scary new diagnosis while I was on vacation. On my return, it got real quickly in that I met with the neurologist a week after we got home. He spelled out the reality of having Fibromuscular Dysplasia in both carotid arteries. At the appointment, I was cool-I didn’t freak out. Didn’t even feel I wanted to. However, on getting back to the car, when my husband asked what he said, I broke down. The feeling of having a ticking time-bomb in my neck hit me hard.

Also, I started back to EMDR therapy starting the Monday after our return. That first session, we discussed particular difficult events in my life for further reprocessing. That night, I had nightmares. For a few days, I had the familiar tightness in my chest, which I’ve taken for a signal from my body that I’m anxious.

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Listening to my Body’s Pleas

I had planned on diving into my blogging work once I got home. I really didn’t do much during the month of October and had planned for that. I really thought I’d get back to it and actually dive deeper into the technology of SEO, web design, and promotion. I had let my wonderful chronic-illness-family know that I’d be less involved in October but back in November. They fully understood.

But I wasn’t able to write a post or even get into my social media to participate in the group I help monitor, Chronic Illness Social Pod (both on Instagram and Facebook). I let them know that I had to take a real time away to rethink my participation and figure out just what was going on. To do this, I unfollowed virtually everyone for 30 days on Facebook and stayed away from all my other social media accounts for three weeks. I stayed away from the news, as much as I was able because the state of our country and world right now is particularly distressing. And finally, I made some changes to my daily routine that seem to be helping my energy levels, clarity of thinking, level of pain, and my mood.

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Making Some Changes

While on my blogging sabbatical, I looked into figuring out how to reestablish my balance. One area that was definitely out of whack was how I started each day. I was diving into my blogging work (being on the computer and online for a few hours every morning). I realized that that was setting the tone for the day and effectively hurting my body and my ability to manage my stress level. For someone with Fibromyalgia, it’s not good to sit around too much, but after 2-3 hours online, I often would lose all steam to be active.

However, while I let go my blogging work, other demands on my time stepped up: helping homeschool my 5-year-old granddaughter who’s school went online the last week of November through the end of the holiday break. Also, my daughter needed a bit of extra help around her house. And of course, the holidays were coming up.

I am beyond fortunate to have found two support opportunities that helped me when I was at my lowest. First, I had joined a Fibromyalgia support circle of with 3 other women just before our trip. Our communication via email and Zoom has helped me feel connected and understood as well as give me some tools for re-establishing my balance. It was through a video Elaine shared about creating a healthy morning routine and how it has helped Dr. Terry Wahl keep the neuropathy in her face under control that I realized I needed to develop a morning routine that built me up rather than getting directly on the computer to get to my blogging work.

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Sharon and I talked quite a bit to hone the words to fit my life goals.

Health Coach Help

Also, I jumped at the chance for five free health coaching sessions with the founder of the Fibromyalgia Association of Michigan, Sharon Waldorp. She had recently completed her training and needed to get her hours of coaching experience in before taking her final certification test. Her guidance helped me to get on track with a healthier morning routine. Her weekly coaching has helped me stick to my commitment and I’m reaping positive results for three weeks now. I’m continuing with her services to help me go on a gluten free diet to see if it helps with joint pain I’m experiencing.

The sessions with Sharon helped me to focus on what was important and gave me the accountability that I just couldn’t do on my own. First, she guided me to develop a mission-statement-mantra which I put up next to the mirror in our bathroom and on the fridge. I have worked on saying it often, during meditation, when showering, as a part of my gratitude time, or whenever I start feeling low.

After each health coaching session, Sharon emails me the notes from our work which means that
I don’t have to take notes while we talk and I have something to refer back to.

Developing specific SMART (specific, measurable, attainable, relevant, and time-based) goals for the week. Having it written down and knowing Sharon would check up with me the following week just really gave me the push that I needed to follow through. I’m currently using Insight Timer for a guided morning meditation. I have used the Calm app before and like it, too. There are several free guided meditation videos on YouTube as well. I began to record the amount of water I drink during the day, which had the added benefit of prompting me to drink more. The daily elliptical or walk outside before 10 am has helped me to feel more alert and energetic. I have had a couple of days where I felt like I had pushed myself too much and had to rest, do myofascial release, and alternate heat and then ice; however, my clear head and positive mood show me that it is working.

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My granddaughter and I put on a play with help from my daughter and husband.
We prepared over several days and it was performed in three or so minutes:) Well worth the work, though.

Ready, Set, Write

We had a wonderful Christmas at our house. Our small family was able to pretty much have our usual celebration and traditions. We’ve had to forgo getting together with my sister’s family and my larger family this year due to COVID-19 precautions. By making changes that made our time more fun and less work, we all commented on how much we enjoyed our time together.

I have continued my EMDR therapy and have gotten four sessions of reprocessing in that I believe is helping lift the anxiety and sadness I’ve had for so long. I know that I have a lot yet to work on, but I’m feeling lighter already. I will write more about how EMDR therapy works and some interesting research about brain rewiring and how EMDR is proving to be useful.

On January 4th, I will be meeting with a cardiologist who specializes in Fibromuscular Dysplasia (FMD). I’ve heard wonder things about his care and understanding of the disease. I plan to write more about what this disease is and about the FMD groups and resources that I’ve found. There aren’t a lot of resources out there, but the ones that I’ve found have really helped (like helped me to find this doctor who is at the University of Michigan, 4 hours from our home.)

I’ve found new energy and focus in my writing. I’ve decided to not try to up my website-designing-game or to improve my outreach which takes a lot of time and dedication. With that in mind, I will plan to write one post a week, usually publishing on Friday, sharing out on Friday also. In addition, I am rejuvenated in my goal to write my fiction novel that I started two year’s ago.

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Navigating Life With Fibromyalgia with Healing Support: Interview with Elaine Merryfield: Author, Educator, Healing guide

Navigating Life With Fibromyalgia with Healing Support: Interview with Elaine Merryfield: Author, Educator, Healing guide

I love it when life brings you wonderful surprises. This happened to me a few months back. I had been researching something about living with Fibromyalgia. I had found YouTube videos with Dr. Ginevra Liptan and preceded to watch them all. This led me to find Elaine. I have been very interested in calming the nervous system, so that brought me to watch her interview with Meshea Crysup. I fully connected through the screen with Elaine’s calming presence and welcoming smile.

Meshea Crysup talks with Elaine about the importance of calming the nervous system AND
she gives us tools for real-life application to actually make a difference–
to actually help you minimize fibro, MAXIMIZE LIFE!

Around this time, I began to get more active on my LinkedIn account, sharing my blog posts and other writings. I decided to look up Elaine and Dr. Liptan to connect with them. To my surprise, a week or so later, I had a message in my LinkedIn inbox from Elaine asking if I would like to Zoom with her. She had recently read my post about my difficulty using the word warrior when referring to myself living with Fibromyalgia, and she felt that we were of the same mindset.

Our first conversation was so uplifting. She and I seemed to talk like we’d been friends forever. We talked about our wellness journeys but also just about our interests and our life paths. Before our Zoom conversation, I decided to look up her website. I could tell that she had put it together herself. While I am not at all a guru for website design, I felt that I could possibly help make hers reflect her beautiful, calm, vibrant soul. I wasn’t quite sure how to broach the subject, so I sent her a message via LinkedIn and shared my website (at that time on Blogger), my husband’s website for his audit contractor business, and my brother-in-laws golf club making business that I had just finished. I told her that it was something I found fun and would like to learn more about. She agreed and we began a couple of months of going back and forth creating her site that I’m very proud of and she loves.

After a rough patch with Fibro symptoms, Elaine reached out to me to be a part of one of her Healing Support Circles that started this past month. Realizing that I could use some ongoing help, I decided to join and I’m so glad I did. We’ve only met once so far, but I felt a connection between the four of us that I believe will be nothing but fortifying. While I’m fortunate to have family and friends who are so understanding and caring, they just can’t fill that need for connection with others who are living through the same thing. When each of the other women shared their story (as a part of getting to know one another), I found myself shaking my head in agreement. I could identify in so many ways. Elaine, was one of us but also played the role of guide so that the two hours were purposefully helpful. I was surprised at how quickly the time went by. We will meet monthly and have some email correspondence in-between. I told them that I had them in mind as I went about my day. By doing this, I was able to actually follow through with pacing much better than I had the week prior. That bit of accountability, knowing I’d be talking to them again in a month, really helps.

And so, I asked Elaine to share her story which is entwined with helping others navigate this life of living with Fibromyalgia. It is my privilege to share this authentic, kind, wise, and inspiring human with you.

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Q1: How do you help those living with Fibromyalgia? What are your Support Circles?  What would a session be like?  

Circle graphic with image of a sunflower, at the flower's head is a photo of a seated, smiling older woman with short blond hair wearing a peach top.  To the left of that image in black font are the  words Healing Support Circlies with Elaine Merryfield: Educator, Author, and Healing Guide

I strongly believe in the healing power of the mind-body-spirit relationship. I’ve developed this healing philosophy after years of personal experiences, my background in nursing, past training in biofeedback techniques, and various trainings in mindful-awareness practices.  The mindset, i.e., our perspective and beliefs,  about our challenges and our shifting circumstances can play an important part in either increasing or helping alleviate the intensity of our mental, physical, and emotional distress when living with a chronic health challenge. It is also where we possess a lot of power to make choices on our own behalf. Fortunately, we live in a time now when neuroscience has studied this for more than three decades, including an extensive investigation into the benefits of mindful awareness practices. We also know that the body is naturally designed to heal or actually, recalibrate and regain its internal balance whenever possible. It is also important to recognize that each person’s circumstance is unique. 

I was diagnosed with Fibromyalgia in late 1989 and have been guiding and supporting others toward living better and well with Fibro since 2000. My continuing focus in helping others who live with Fibro is to provide information and support in forms that are both easily accessible and affordable. This evolved out of my own experiences of feeling isolated and having limited amounts of resources during the early phases of my own healing journey. My intent is to help ease the sense of struggle when it arises and consistently help reaffirm the power that each of us possesses to activate our internal healing processes. I have also learned that it is possible to regain the experience of wholeness even if some of the symptoms of internal imbalance may persist.

Most often our present-day healthcare system does not have a lot to offer those living with chronic conditions other than advising of ways to cope/ manage the symptoms. This often can feel like drudgery, and it becomes easy to lose hope.  Chronic conditions like Fibromyalgia are complex and have developed over time. So it takes time, exploration, and experimentation to unravel the factors that contribute to the imbalances in the body. I hold the view that being truly heard, listened to, and supported by those who understand is a potent type of medicine during this journey.

I facilitated in-person fibro classes/ workshops and support groups between 2000 to 2018 at Tuality Health Education Center and then at the Frida Center for Fibromyalgia, both in the metro Portland, OR area. Since fall 2018, I have provided most of my support options online.

Elaine's cove of her e-Book: LIfe Beyond Fibromyalgia: A Personal Guide for Moving Forward and Leaving Struggle Behind (text on light green background) Underneath, sunflowers with her name in white: Elaine Merryfield

My current offerings include:

  •  Small group online Healing Support Circles since 2018– each meets once a month for two hours via Zoom. The number of participants is limited to 4 maximum. This provides an environment for ease of sharing and allows adequate time for all to be heard. I request a 6-month commitment when a Circle starts but they tend to continue considerably longer as participants enjoy the ongoing support and relationships they make within the Circles. 
    • Sample session: I prepare a topic for the month’s discussion (For example, exploring the role of our mindset, keeping it simple, pacing, identifying what most deeply nourishes each person and what most easily depletes, accessing calm and ability to refocus in the present moment, learning to set boundaries when needed, restoring natural rhythms, etc.) but also adjust as needed if the group members have a specific area of recent concern to share and discuss. I provide and lead participants thru at least one calming and mindful awareness practice as part of each meeting. I also advocate for regularly practicing self-kindness and self-compassion for pausing, calming, and refocusing. Short 6-10 minute audio recordings that I have made are also available for participants to use at home between our meeting times for ongoing support.
  • An e-Book: Life Beyond Fibromyalgia (This is available at Amazon.) 
  •  A set of 36 Healing Message cards (each is 4 1/4” X 5 ½”) Each card displays various images from my personal photography on one side and messages of support in the form of (19) self-care suggestions and helpful reminders for daily life, (8) reflection questions to help you refocus on prioritizing your needs and resources, and (9) simple guided calming practices for supporting your mind and body on the reverse sides. (These are available at my website: )
Moss ground covered on both sides with pots of all sizes and colors full of a variety of flowers in bloom with yellow, pinks, whites, and blues. In the back are two dark green Adirondack chairs with a white table in between.
Gradiated light yellow to white rectangle with brown text testimony from Sherl R: "Elain has guided me through more than one energy dip. Her class was just the right introduction to move me from concern about my Fibromyalgia diagnosis to hope. Her gentle, useful tools help navigate mind, body and spirit. Elaine is an empathetic, gentle teacher. I use her beautifully  photographed Healing Message cards to keep me motivated with one inspiring thought to focus on each day."
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Q2: How have you adapted your sessions to online from in person. How are your clients responding?

When I moved from in-person to holding our Healing Circles meetings online, the biggest adjustment seemed to be my own. It took me about 3-months, personally, to initially adjust. I really missed the energy that’s in the room when groups met in person. I had led in-person meetings for over 18 years.  However, the participants seem to have adjusted just fine. They really like that they don’t have to leave home to be with me and that they can come as they are. I tell them they can even come in their pajamas if need to, and it has occurred a couple of times. I observe the same rules of confidentiality about what is discussed in the meeting time stays in the meeting the same as we would in an in-person meeting. I also encourage flexibility- they are free to move about and change position as needed and they are encouraged to bring a beverage or snack with them if they want, as we often have group members from different time zones. We generally take a 5-10” break midway also as needed.

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Q3: How are your Fibromyalgia symptoms?  What do you do for management?  

The first decade of living with Fibromyalgia was really rough. There were no approved prescription medications available and limited community resources. So, I had to pretty much sort out my own healing plan with limits on my financial resources due to working less and less. This is another reason that I am committed to supporting others is to help them shorten their journey to feeling better.  

During the past three decades of living with Fibromyalgia, I have experienced two remission periods of 3- 4 years each when I was pretty much free of symptoms. In fact, each time, I wondered if it was gone forever! The symptoms returned, though, after I experienced some assault on my body such as an injury-producing fall and during a period of five oral surgeries during which I developed a jaw infection. So unless my body sustains significant extra stress such, as I just described, then I generally do very well. I have had little pain on a regular basis for many years; however, I do need to monitor my activity level or I can feel increased fatigue. However, I am also older now.

Regularly practicing calming through present moment awareness has been my foundational piece of self-care for the past two decades. I also walk 1 ½ miles on a regular basis generally 4-5 days a week in my neighborhood. I do longer walks up to 4-6 miles when friends are available to join me. Weekly, I attend a gentle yoga class until the COVID-19 virus arrived. Another big part of my healing balance plan is using the “medicine” of creative expression. Photography has been one of my favorite ways to play and create for decades. Another creative outlet I have is my beloved container garden filled with a variety of flowers. Every morning, you’ll find me there. Many of the images I used for the Healing Messages Cards come from my garden. In addition, listening to and moving to music is a really fast and easy mood shifter for me. I express my creativity in the kitchen now and then as I like to try out new recipes.

I am fortunate to have a primary provider who is very supportive. I appreciate how she admits when she does not know the answers. I am grateful for the relationship that we have slowly developed over many years now. I have a chiropractor who uses a gentle cranial sacral technique which has been very helpful. I have also worked with a body-focused trauma release therapist who has used EMDR and also tapping during three brief treatment intervals over the years. I have experienced a great deal of relief and feelings of liberation in my body and my whole being from these sessions. My stamina also noticeably improved after my initial work with her. I have also found acupuncture helpful at times.

The work I continue to do supporting others is also a big part of my own self-care. It constantly reminds me of what I also need to give attention to myself plus the interactions with the variety of wonderful people I meet is both meaningful and fulfilling.

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Q4: You’ve hinted to me that you have something new in the works? Do you want to share it here?

I would love to add some future offerings encouraging creative expression.

Years ago, I facilitated Women Living Creatively workshops as an antidote to stress as I was working in stress management at the time. So the relationship between creative expression and our health has interested me for some time. I am aware that it has been explored somewhat with cancer treatment. This past May, for Fibro Awareness Month, I had planned to offer an in-person workshop in Portland. I had found a great meeting place to accommodate 10 people but sadly the COVID-19 virus intervened. The workshop agenda was to help attendees create their own personal “healing messages” with materials and images I would provide. Each would have something tangible that they had created in support of their healing to take home with them at end of the afternoon. It would have been great fun.  I was also trained in the SoulCollage process in 2010 and still use it for my own support as visual images hold so much potential for stirring our creative imagination. I held an intro SoulCollage workshop at the Frida Center several years ago and the six attendees loved it and asked for more. I believe that incorporating play and using our creative imagination in whatever way is most pleasing to each of us can be a potent contributor to our healing process. 

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What closing thoughts would you like to give us?

A rectangle  graphic with brown/gold background with a sunflower in full bloom taking up half of it from the top right corner down.  Cream font with the quote: "When we are able to replace the question of 'whey is this happening to me?' to asking 'What is this trying to teach me?' then everything begins to shift." -Unknown and at the bottom of the rectangle under the quote is

I am committed to sharing my belief that we each have access to much greater power in support of our own healing than most of us are aware.

Contact Elaine via her website or her Facebook Group. She welcomes any questions you have about learning to live well with Fibromyalgia. To receive updated resources and her support offerings, join her e-mail list on her CONTACT page.

If you’re interested in doing an interview or guest post for Pain FULLY living, contact Katie via her contact page. Oh, and if you’d like basic website design help for very little cost, Katie is interested in exploring this more. Contact her via her contact page.

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Image of Alison sitting on a wooden bench, leaning over with her elbow on her knew and chin in her palm. Background grass-green with white text for the blog title

Shifting from Surviving to Thriving with a Little Help

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Alison Hayes is one of the wonderful people I’ve met through groups like Chronic Illness Social Pod which is a group of bloggers who live with chronic illness and write to promote awareness and understanding for what it’s like to live with chronic illness. Through helping one another to get their message out, we read each other’s posts and get to know one another quite quickly. Through that connection, friendships grow.

I have come to admire Alison at first due to the wealth of knowledge she shares with the focus of THRIVING WHILE DISABLED, but beyond that, I’ve come to know her kind soul who loves to go for walks in nature and help others in whatever way she is able. For those of us living with chronic pain, often things can feel just too difficult to wade through.

As I am considering applying for disability due to struggling to work on any consistent basis. (While I am officially retired, I hadn’t planned on retiring just yet, and on retiring, I had also planned to work part-time to earn extra income until I turn 65.) However, the process of applying seems pretty daunting.

After learning about Alison’s studies in the US welfare system and the experience she has gathered by navigating the labyrinth both for herself and for her partner, Al after his accidents, I approached her to share the coaching services that she offers. Her goal is to help others thrive by getting the support they need without feeling overwhelmed or degraded through the process.

I hope that you will find some helpful information from what she shares. I encourage you to explore the links to her posts that she’s provided for the topics you would like more information. They offer great insight and resources.

Guest post written by Alison Hayes of

Living with Chronic Pain and Disability

I know that chronic pain can be debilitating. Until my migraines started last year, I didn’t have much personal experience with it.  I have spent the last 20 years living with Functional Neurological Disorder(FND), which in my case primarily expresses as muscle jerks and movement symptoms.

My partner’s chronic pain journey had started in 2012 when he was in a car accident and was left with a Traumatic Brain Injury (TBI).  To this day he has a headache at all times, though he doesn’t always notice it anymore. In 2017, he slipped and shattered his acetabulum(the hip joint and largest bone in the body), so that residual pain tends to be worse. 

Basically, if he notices his headache, that usually means his hip pain is relatively low.

I know that pain can make it more difficult to concentrate, to make decisions, to think things through clearly. 

It makes it harder to think ahead and harder to find joy.  It often leads to sleep issues and other challenges.

I can’t solve pain, but I am able to do is support you in managing those major life decisions that can be so hard for people who aren’t dealing with chronic illness to understand.

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The Purpose of Thriving While Disabled

Alison took a long and winding road to get to where she knew she had to create her blog Thriving While Disabled.
However, each of her stops has prepared her to help others living with disabilities thrive.

I created my blog, Thriving While Disabled, with a goal of helping other disabled people to create and live their best possible lives by solving the problems that most interfere with their quality of life – and to help folks regain control over as much of their lives as possible.

A Partner in Getting the Medical Care You Need

One set of experiences that I offer a lot of guidance on is managing your own medical care.  While most of us have learned, painfully, through trial and error, about our conditions, diagnosis, and treatment, I offer up my experiences to guide folks towards a path of better primary care physicians, better treatment, and more accurate diagnoses. 

I think it’s vital to find doctors you can actually work with, and make sure that your doctor gets the most accurate picture possible. To do that, you need to understand your condition, testing, and treatment well enough that you know when you need to get a second opinion, and when your doctor is really able to help you.

I’m also now offering coaching services for people on this front – so if you’re dealing with a complex medical choice or are struggling with finding the right specialists, or otherwise need somebody slightly more objective who can help you through a really challenging medical situation – I’m available to help you!

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Financial Support

I also know that another big issue with more complex or severe medical issues, is that we often find ourselves also facing economic hardship and often may lose employment.

I have been living on Social Security Disability Insurance for the past 16 years, and know the good, bad and ugly about it.  

I’ve done the research and gathered knowledge over the years, and I feel confident enough in my understanding of those programs and the social welfare system for low-income folks that I’m happy to help guide others towards finding and applying for the right programs for them. 

The decision to apply for disability coverage isn’t an easy one, and the process is long and can be tiring. 

However, the comfort of having a reliable and steady source of income can be huge, and if you aren’t able to work regularly, and that is unlikely to improve, it may be worth the time and effort to find a new reliable source of income for yourself. 

Having started two businesses myself, I’m also comfortable helping others to understand how to work while maintaining their benefits, whether it is for an employer or self-employment. 

Alison explains how she can help you thrive by getting you the resources you need.

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Daily Life Resources

Pain management is important, and being able to get the appropriate medication and treatment are an important part of that. I want to help you make sure that if you’re eligible for the support, you get it. Whether it’s health insurance, like Medicare or Medicaid, food, heating and utility assistance, or the financial supports of Supplemental Security Income or Social Security Disability Insurance, I want to help you find and get the supports you need so that you have that bit less stress in your life.

Relate Posts:

Living Your Best Life

Many of us have stress-related conditions, which means that as our stress levels increase, so do our symptoms.  I want to help others reduce their stress, so that it’s easier to live a better life.

Besides the stress of medical care and the stress of survival, I know that many of us struggle with mindset, attitude and expectations. I’ve found that the more mindful I am, the better I can manage my stresses. 

I do what I can to exercise, eat better, meditate regularly and focus on consistently taking good care of myself. 

I want to help others do the same. 

I know that we live in a world full of accessibility challenges, so much of it is a struggle, but we all deserve to be happy.

You deserve to find or create a quality life for yourself.  I want you to succeed and if I can help you – it’s my pleasure to do so!

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My coaching and online courses are all created with protecting your mental health firmly in mind, so expect that any course I teach will include references to mental health or self-care. I hope you are able to take that next step in your life(whatever it might be for you), to get one step closer to thriving!

Thriving While Disabled Courses: