White background with blue/teal poppies (drawn by Sarah Malm), falling randomly around a white box bordered with a light teal frame. Inside the middle white box is the title text done in teal font. Sending Love: Interview with Sarah Malm on Art, Business, and Life with Chronic Illness

Sending You Love: Interview With Sarah Malm on Art, Business, and Life with Chronic Illness

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

White background scattered with blue/teal poppies drawn by Sarah Malm, with a white box outlined in a teal frame with the title: Sending you Love: Interview with Sarah Malm on Art, Business, and Life with Chronic Illness in dark teal font

Through my work as a blogger and as a member of the chronic illness community, I am fortunate to meet unique, talented people who understand what life is like when living with chronic illness. I met Sarah Malm through my friend, Alison Hayes of thrivingwhiledisabled.com. They became connected through a shared interest in creating an online workspace for those living with chronic illnesses. The group they created called Spoonie Coworking Space meets every Monday and Friday for one hour. During that time, the participants share what they are working on for the next 45 minutes and at the end, we touch base on what was accomplished. It was here, that I first connected with Sarah and learned about her business.

As often happens, we connect outside of those types of groups and begin to form a friendship. Sarah and I connected due to her heartfelt cards that for me spoke to difficult events that were going on in the lives of those I love. Her cards and other items helped me to reach out with love in a concrete way at a time when I felt helpless to do anything of consequence.

Then, Sarah began to reach out to learn more about my experience with LDN, EMDR, and other ways of living more FULLY despite chronic pain. For me, that has been the main way that I have discovered treatment options for Fibromyalgia, Interstitial Cystitis, and Complex PTSD. Living in a small, rural town, if I hadn’t made these connections I have no idea where I would be today; certainly, I would be much worse off.

And so, it is with great pleasure that I share Sarah’s story with all of you, PFL readers and community. Together, we can realize our potential and live FULL lives that sustain and nourish us.

Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with light teal outline. Inside a square teal frame is an image of Sara.  Her face looks serious, she's wearing glasses and a red sweatshirt.  Holding up her left hand, she's written "I'm imperfect & I'm enough!" on her palm, holding it up next to her face.
Photo was taken & text from Sarah Malm Design FB Page post
This photo was taken 8 or 9 years ago when I was reading The Gifts of Imperfection by Brene Brown. About the same time, I had started creating greeting cards. It has been quite a journey! Personal transformation, divorce, new marriage, and my artwork have expanded and transformed, too. I am still imperfect—always imperfect—but that doesn’t stop me from growing and learning.

Hello Sarah. Tell the PFL Community a bit about yourself.

Hi, thanks for having me, Katie. My name is Sarah Malm. I live in St. Paul, Minnesota with my husband, Stephen, and our dog Baxter. We married a little over two years ago after deciding to move to a downtown apartment near a lovely park that often hosts live music. We looked forward to enjoying free concerts and using the park for walks with Baxter.

But then, the pandemic happened, so it has been a bit of a different experience than we had envisioned. Luckily, the space we live in is beautiful, since I spend nearly all my time there. I have set up a wonderful art space, which has been a big part of my life for several years and has even, in the last year, led to my business Sarah Malm Designs. Just recently, I left my part-time job at a church to focus solely on my business and my new endeavor SENDING YOU LOVE podcast which is coming soon.

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Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with a light teal outline. Inside a square teal frame is an image of Sara, smiling her face lit up.  She's wearing a purple shirt, sitting in her art office.

What chronic pain issues do you live with?

A few years ago, I developed lower back pain that has progressively gotten worse. I was diagnosed with degenerative disc disease and given the label of Fibromyalgia. I have been trying to figure out the true cause of the pain ever since. I also have had hypothyroidism/Hashimoto’s for 20 years.

Tell us about your story? What do you think led to developing these issues?

My pain, strangely, started after an extreme chronic bout of bronchitis in 2017. I don’t know if there is a correlation or not. Currently, I am working with a naturopath after giving up on finding answers from traditional medical doctors. She started me on supplements. Then, for the past month, I have been taking LDN (Low-Dose Naltrexone), 3 mgs twice daily. It seems to take the edge of the pain somewhat, but I still suffer from quite a bit of pain at night. I’m still in the beginning process of finding if LDN will help me and from there what is the best dosage and schedule.

This week, I went began a new treatment at a holistic chiropractor (Secoya Health) that treats from the mind-body perspective. I had my first visit, which involved a thorough intake involving several different evaluation tools. It was quite amazing. I will get my treatment plan next week after they review the results of each of the tests.

What is your day like living with chronic pain? How does it impact you?

I would imagine I have been conditioned to live with the pain in some ways and just power through. But I have to admit, it is absolutely exhausting. I have trouble bending over, putting socks on, and dressing, or putting the harness on my small dog.

Though, trying to get comfortable sleeping at night is the worst. My worst days I am probably a 6-7 on the pain scale. At best, it can be a level 3. Sadly, because the pain affects my energy so much, I feel like I don’t have what I would like to give to my marriage, but we do okay.

The pain has affected my ability to work, either sitting or standing for any length of time is difficult. Two years ago, I worked full-time outside the home. More recently, I was working only 12 hours outside of the home, but as I mentioned, I just left that position.

Even still, I have been able to use my time to engage in my artwork and my own business which feels even more fulfilling. The finances part is difficult, though. My husband and I do have insurance, but it doesn’t cover my current treatment with the naturopath or the therapist, or even the LDN. But, I am willing to pay for it if it works. I’ve spent thousands on medical appointments and consultations that, in the end, did nothing for me. It gets pretty discouraging and hard to have hope for new treatments.

Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with a light teal outline. Inside a square teal frame is an image of a leaf pattern that Sarah has created (yellow, orange, light brown, and brown maple leaves.)
One of Sarah’s new projects has been to create patterns such as this one with the leaves. Her art is impacted by her life. Sarah explained, ” I found a solitary giant maple leaf on the windshield of my car after I left my first somatic experiencing therapy session in October. I took it as a sign of hope and healing. I saved it, pressed it and put it on my scanner to scan so that I could try using it in a pattern like this. And it worked beautifully!”

How is your treatment going?

Since this most recent treatment of Low Dose Naltrexone is fairly new, only time will tell how it will work.

The other thing that I started recently is Somatic Experiencing Therapy to address past trauma. (See her post: Grieving While Chronically Ill and Childless Not By Choice). As I have learned more about the mind-body connection, especially as it relates to pain, I started to research this type of therapy and found someone in my area who practices it.

I’ve had three sessions so far and they have been immensely powerful. I am addressing issues that I didn’t realize were affecting me, at least not to the great extent they are. My therapist says that it is a reasonable expectation that my pain could be resolved. So, I feel hopeful about it.

Would you feel like explaining more about Somatic Therapy? I’m very interested in learning more. It’s very in line with the Mind-Body Syndrome (MBS) therapy that I’ve been practicing.

Sure. Somatic Experiencing Therapy is new to me, and I have only had four sessions. But, we begin each session with me sitting back comfortably in the chair, closing my eyes, and the therapist leads me through a meditative survey of my body, beginning at the top of my head down to my toes, focusing on what I am feeling in my body. Literally, how does what I am feeling in my body translate to emotions I may also be feeling. Once we identify what that might be then we talk about what may be the source of that feeling and why. The emphasis is always to just feel it and not judge it in any way. 

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Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with a light teal outline. Inside a square teal frame is an image of Sara, smiling calmly, with Baxter, her white and black pup. Both are cuddled in an orange, green, yellow, tan Afgan Sarah has crocheted.
Baxter and Sarah cuddled in an afghan Sarah crocheted.

What do you do to manage your pain? Do you have any advice for others who live with chronic pain?

I use the heating pad when necessary. I also have a TENS unit that sometimes gives temporary relief. I take Tylenol regularly, which seems to help occasionally. Stretching and massage with a handball on some of the knots in my back helps sometimes. I would like to be able to meditate, but I find it difficult. Deep breathing and listening to calming music or singing bowls can help me relax.

So, for me, meditation is when you are fully focused in on the present and not doing a ton of thinking about the past or future. Do you feel that when you are doing your art work, that you are focused in on just creating? Do you find this to be helpful for managing your pain, depression, etc?

Absolutely, being creative takes me to a different space mentally and emotionally. I equate it to a kind of meditation therapy. It certainly doesn’t take away my pain, but it temporarily takes me away from my pain. When I don’t focus on my pain, then I am less likely to be depressed, too.

How did you start your business?

I started creating cards 10 years ago when a friend introduced me to stamping and paper crafting. A few years later, after I divorced my husband, I started selling them on Etsy as a way to earn a little extra money. About four years ago, I decided to pursue it more fervently.

Then, in the past year, I began drawing and painting, creating my own original artwork and printing it onto art paper to create greeting cards and art prints. During the pandemic, I developed the mission with my card line: “Send the Love”. Out of that, I have decided to start a podcast which I’m calling “Sending You Love” as a way to connect with others, to offer wisdom and tools to help people learn to love themselves, and thereby love others.

How does your chronic illness affect your business?

I think my illness informs my business, but it doesn’t necessarily limit my business.

My chronic pain is, in many ways, the impetus for working for myself. I want and need the flexibility of creating my own work hours to be able to work around any flares of pain I might have. Also, the creativity of my business is a refuge for me, if not a distraction, from my pain.

Sitting down to draw or paint takes me to a different place in my head. If I am up and moving around trying to do chores around the house, I am focused on how my pain limits me from doing what I need and want to do. If I am drawing or painting, I am in my imagination and not focused on my body. 

When you’re hurting or haven’t slept and you had planned to work, what do you do? Do you push through? Do you have strategies? Can you give yourself a break? How much pressure do you have with your business?

There have been times when I have pushed through the pain in order to accomplish goals I might have for my business. For example, the main pressure might be if I wake up and have a lot of pain, but I have orders that have come in that need to go out, I would work on those. I print most of my orders on demand, so I would need to print, package and ship them.

Other than that, most of the time, my work is flexible, whether it is working on my website, social media, or the actual drawing or painting. I probably should be more scheduled and rigid in how I attend to those things. I often wish I was more organized in planning and scheduling, but right now I am not. I work as my energy allows. 

Give us more about the type of cards and artwork you do. To me, the special thing about your cards (besides the beautiful art) is that you address some heartfelt, real, and often tough moments in our lives. Tell us more about your thinking process as you come up with your art and products.

When I started creating my original art about a year ago, I really tapped into the wisdom and quotes that spoke to me and created art around that. Since I spent a lot of my life feeling alone (which makes sense now because I had essentially abandoned my true self), I feel like I want my art to reach people who may also be feeling alone or helpless.

I want to inspire, bring hope and love to others. Honestly, most people are only ever thinking of themselves. As an empath, I feel unique in that I am always “feeling the room” and aware of the energy others are giving off. I feel this innate responsibility to serve people who may be like me, “feeling all the feels”, and need some support, and that includes those who experience chronic illness.

My podcast, “Sending You Love”, is born out of my artistic journey and wanting to connect with people like myself on a deeper level.

As we grow and change, learning more about what makes us who we are and engaging in becoming our best selves, we will find that some people around us will fall or drift away. Why? Because they don’t understand the changes that we are going through. It’s the same when we have chronic illnesses. People don’t understand what we are going through, and it is easier to avoid us than really try to understand what we are going through.

Throughout my growth and change, as well as my chronic illness, I have been determined to not give up. I am determined to become my best self and to love myself first. If that means that people who don’t understand fall away, then fine. It’s hard when it happens, but I have also found other people on my journey who DO understand and have supported me.

Sometimes these supporters have been complete strangers, but we connect on a deep level because of a shared understanding whether it is about personal growth and/or chronic illness.

I want “Sending You Love” to be a place for people to find a voice and a community where they feel understood, heard, and loved, even if we are strangers. I feel driven by the universe to connect with people so that they know they are not alone. This is partly informed by my own personal theology that God/Source/Creator doesn’t intend for us to live alone or in pain. We are each created as unique individuals for a purpose, and we are LOVED, unconditionally. The goal is to see me, and for all of us to see ourselves through this same lens. I hope my podcast will help others connect with that in their own way. 

Last, what advice or words for those reading this, would you like to give them?

My advice would be to find a balance that works for you. You can’t follow something that someone else does because you are unique and what works for someone else may not work for you.

One of the things I have learned recently through my somatic therapy is to honor the little girl that I sort of left behind because I felt, at the time, it was more important to take care of others and not disappoint others. I am learning to frequently check in with her now. Am I doing something because “I” want to do it, or because I think someone else wants me to do it, or because I am afraid of disappointing someone else.

I have spent much of my life living it for other people, and, in part, I think that is the emotional source of my pain. Please, don’t do as I did. Please, be true to yourself. Love yourself most. Honor what is true for you. 

Connect With Sarah

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.

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Background, sandy beach at Pictured Rocks Nat. Park at sunrise, aqua sheer layover with title: Waliking Through Walls: Chronic Pain Won't Stop Me Anymore

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Last week, I did something I thought I’d never do again.  I backpacked for the first time in five years! 

Fibromyalgia Walls Closing In

As I followed the best advice from experts in the management of Fibromyalgia, I found that I increasingly felt closed in, cut off from what I felt I could do. Those of us living with Fibromyalgia know the fear of the flare. We’ve been told that limiting our activity is the best way to keep that at bay. The fine balance of doing and resting tends to be the focus.

For me, one who has been very active all my life, the more I followed this commonsense advice, the more I felt like the walls of Fibromyalgia were closing in on me. I had given up the thought of ever doing many things I loved to do. Actually, I was coming to accept that was the way things were.

After this experience, chronic pain won’t stop me anymore from doing the things I love.

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A 40-year old Katie, brown hair, wearing a t-shirt and shorts portaging a canoe over her head. Background is wooded (Algonquin Provincial Park).
Me, portaging a canoe at Killarney Provincial Park, summer of 2011.

Life Before

Prior to developing Fibromyalgia, I lived a very active life.  After a full day of teaching, I’d come home to a full night of family life.  On the weekends, my husband and I often do all our house chores of yard work, laundry, and the like, as a family.  Then, we’d fit in a hike,  family gathering, or attend our kid’s soccer games.  

In the summer, we would go on extended vacations that tended to be both rustic and physical: hiking down the north side of the Grand Canyon, a week-long canoe trip in Killarney Provincial Park, or exploring Isle Royale.

That all came to a halt in November 2018 when I found myself struggling to even work.  My last day of teaching was December 7th, 2018 when I went on long-term leave, fully believing that if I took a month or so to take care of myself, I’d be able to go back.  That didn’t happen, and since that time, I’ve spent most of my time focusing on getting well.

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MY LDN Journey

A huge part of my healing work has been done through research.  Living in a small, rural Michigan town, there’s no one who knew much about Fibromyalgia.  I, myself, had never heard of it before my diagnosis.

Discovering Low Dose Naltrexone 2 years ago, led me to a point that I could actually consider going on a 40-mile, 5-day hike along the North Country Trail in Pictured Rocks National Forest.

This past April was my one-year anniversary since starting Low Dose Naltrexone.  I’ve detailed my journey through my blog. However, it was soon after that I talked with Linda Elsgood and discovered that I should look into taking my best dose (4.5 mg) twice a day rather than what I had been doing, dividing the full dose into two separate doses of 1.75 mg.

After further research, I found that for Fibromyalgia and C-PTSD, doctors have been finding good success with two or even three doses a day.  (LDN Book 2 & Dr. Brian Johnson)

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Two older women standing on either side of a large builboard map of Pictured Rocks trail, each smiling while packing 30+pound backpacks and wearing backpacking t-shirts, pants, and boots.
Map of Pictured Rocks trails.

A Chink in the Wall

Only this winter, I turned down the offer to do this exact hike with two of my best friends.  I just didn’t feel I was able.  However, since starting the double dose of 4.5mg (on waking and around 4 pm), I was able to have more active days and finally be more predictable.  

I began to hike again with a group of women (my age and older) called the Wander Women of Newaygo.  Every other week, we would do a day hike of 4 to 9 miles. As the weather warmed up this spring, my husband and I began to do day hikes, but also some rustic camping over several days, including day hikes and kayaking.

Last month, I was feeling pretty strong during a hike (those of you who get into the woods know it can cause a thing called “hikers high”. It was then that a newly acquainted hiking friend from the WW group asked if I would like to join three others on a weeklong trip.  Impulsively, I said, “I’d love to!”

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Three older women sitting on a fallen tree trunk which was laying over the trail.  Their full backpacks are facing the camera.
Taking a much-needed load off in the middle of the North Country Trail.

Doubt Takes Hold

When I went home, though, and told my husband, the reality of the trek hit me.  (He had done the hike the summer before with my cousin and found it very challenging.) He was worried that my body would lock up and I wouldn’t be able to make it.  Being there is no cell service and he was to be out of town for work that week, the concern was real.

The past few months prior to the hike, I was involved in a lot of long hikes, yard work, and moving my daughter from a four-bedroom house to a 3rd-floor apartment. This level of physical activity had proven tough on my body.  My body literally locked up, giving me electrical zaps and zings in my lower back that would cause me to have to freeze.  However, with the LDN and other management protocols I use, I was able to keep going day after day.  

What amazed me was how clear my brain was and how much energy I had each day.  This had been the cause of my early retirement.  I could mostly push through the deep muscle pain I have everywhere, but the inability to think/talk and the feeling that my body was filled with wet sand, made it impossible for me to function.  

Now, I will admit, before my LDN dose kicks in (generally an hour after I take it in the morning), I struggle to move.  I tend to be really zombie-like and the pain/tight muscles really need massaging.  But after that, I have been pretty good until the afternoon. I can feel myself “dropping” which leads me to take my second dose.

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Three older women, standing smiling into the camera with the beautiful blue of Lake Superior and the arch rock formation at our backs.
Lake Superior and Pictured Rocks Arch in the background.

Call to Be Courageous

The group of three women, all older than me and very supportive, understood my concern.  Nancy, the one who had invited me, offered to do weighted hikes (meaning I carried a backpack that I gradually increased in weight over several hikes).

 Also, she helped me develop two contingency plans.  One: being it’s a straight path, I could just rest and do my myofascial release with the therapy balls I would bring with me. If that meant they went on ahead, that would be fine because I could catch up with them once they stopped at the designated campsite.  Two: the trail has a few drive-up spots for day campers/hikers.  I could most likely find someone to take me out to the town, so if I carry my ID and Visa, I could go to a hotel. (I had packed my pain management paraphernalia in my overnight bag for after the hike, which I could get access to in this case).

In the end, I just felt called to do this hike.  I can’t explain it, but I think the walls of Fibromyalgia had been making me feel more and more limited; I just had to break through to prove that I can live the FULL life that I have been striving for.

So, I purchased a lighter-weight tent, backpack, sleeping bag, and a few other special things.  All our gear was 25+ years old, so it was reasonable, but it also locked me into doing the hike.

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Four older women, smiling while wearing their full rain gear and backpacks after a night of thunder storms.
After a night of thunderstorms,
we are drenched but ready for the day’s hike.

Hiker Ups and Downs

I’m not going to say this trip was all sunrises, Caribbean blue waters, and campfires, but a good portion was.  For the upper peninsula of  Michigan, the weather was pretty perfect for the hike (70o days and 50o nights).  Also, there were NO bugs (a miracle, really).

We had a pretty intense thunderstorm the first night.  My tent stayed dry, well almost.  

I also have Interstitial Cystitis, and as I have been working on “Unlearning this Pain” with Dr. Howard Schubiner through his Mind-Body Syndrome (MBS) Therapy, I had been having more intense bladder spasms the few weeks prior to the hike. 

This was a main concern of mine, so I had packed with me a women’s urinal, Circa Care pee cloth, a few level-5 Poise Incontinence pads, and some quick-drying, moisture-wicking underwear.  Dr. Schubiner told me to keep no secrets and use humor with my situation, which I did my best to follow.

That first night, after getting up 3 times to pee in the woods, the storm began to rage, about 3 am.  In the end, I realize that I should have just gone out into the storm at 5 am when my bladder started to demand it because either way, I’d get wet, but I just couldn’t think straight.  

In the end, I was able to wash things out at our next stop, using biodegradable soap. Using my pads, I had only gotten my underwear and thermal leggings wet. After this situation, I didn’t have any more issues at night, other than getting up like 4 times.  However, hiking with a 32-pound backpack doesn’t make it all that easy for an attack of urgency.  Luckily, my companions fully understood, and we all shared embarrassing stories that got us laughing pretty hard about the whole absurd situation.

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Three older women on a sandy beach, blue skies above and pine trees in the background, doing sun salutation with hands together above their heads.
Morning yoga at Mosquito Beach before getting our water filtered.

Retraining My Painfilled Brain

The first three nights of backpacking an average of 8 miles a day, found my body seizing up and zapping me as I worked to put up my tent and make my dehydrated dinner.  I had packed two main luxuries: a camp chair and four 6 oz plastic bottles of wine to have one per night.  

Even though the zings and zaps came, I would stop briefly and then continue on.  Each night in my tent I did my “rolling around on my balls” as I told my fellow hikers (myofascial release) and in the morning did stretching and yoga. At night, I did guided meditation (based on the MBSR of John Kabat Zinn). While I hiked, I walked mindfully and did a lot of gratitude and positive affirmations, “I am strong. I am safe. I am healthy.”

What may be a breakthrough is that by the 4th night, the electrical shocks in my back had stopped.  Even after the 5th day of hiking, I didn’t have that issue.  I believe this is because I’m showing my over-amped nervous system that I am actually okay and not hurting myself.

Three older women looking out at brilliantly blue Lake Superior from a sandy ledge, eating lunch.
After sitting down, it was definitely hard for me to get up.
We still had 6 miles to go.

Change to Three Doses a Day

After the first night of extra pain in my elbow and knee joints, keeping me awake and feeling pretty worn out about 7 pm each day, I decided to take a third dose of 4.5mg. I had been taking my second dose earlier in the day (2 pm) than when I was at home, and so, I took another at 9 pm.  

With all the physical exertion, I didn’t have my normal struggle to fall asleep that I usually do with taking LDN at night.  Also, the level 6 joint pain was much less through the night.  I believe this extra dose really helped me to do the whole 40-miles.

Four older women, bare feet, standing in Lake Superior.  Sandy beach in the foreground and gray cloudy skies above.

Hiker High

I can tell you that six days after coming home from our trip, I still am feeling the “high”.  I didn’t have the awful “flare” that those living with Fibromyalgia dread so much.  I’ve had less activity and have done a more myofascial release during these last days because my legs are definitely more clenched up. 

However, my mind is feeling fairly clear and my body feels up for having my granddaughter spend the night. 

I am so very grateful to have broken through this wall that I had thought was permanent. I know now that I am able to do the things that I love with people that bring me joy. LDN has been an integral part of getting me this far down the trail.

6 year old girl dressed in all black pointing a wand at the camera, a older man, red/gray beard dressed as a Hogwarts student, scowling, and me, white hair, wearing Griffindor colors/tie and pointing a wand at the camera as I try to look scary.
The day after I got home, my husband and I spent with our granddaughter at the Zoo for Wizarding Day.

I have spent four years on this wellness journey. I do not want to give the impression from this post that I could have ever jumped to this endeavor without all that has come before. I needed to follow the conventional wisdom of pacing, etc. to be able to calm down my nervous system to even be able to function enough to work toward this goal. There are MANY things that led up to this moment and many things that I continue to do. To learn more, read about my journey from my posts. I’ve documented from the very first few months.

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.

Continue Reading:

Unlearning My Chronic Pain: Mind-Body Syndrome
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Unlearning My Chronic Pain: Mind-Body Syndrome

Unlearning My Chronic Pain: Mind-Body Syndrome

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Title graphic with colorful, paint splattered background (blues, yellows, reds, and oranges).

Two months ago, I met for the first time with Dr. Howard Schubiner, a Michigan physician and veteran pain research scientist. He has been treating patients with chronic pain for over twenty years. We met via online video (a practice he began in reaction to the COVID pandemic). In our initial consult, Dr. Schubiner spent two hours with me, reviewing my pain history and as much of my personal history as we could fit in.

Those of you who have followed my wellness journey since developing Fibromyalgia and having to leave my teaching career earlier than I had wanted know that I have focused my efforts on rewiring my pain-filled brain. I fully believe in brain plasticity, which to me means that I can lessen the pain pathways that have developed and create new ones that lessen the impact of chronic pain on my daily life. This is what gives me hope and purpose.

Dr. Howard Schubiner has been treating chronic pain patients for nearly two decades, during which time he has been developing and refining his mind-body approach. He is recognized as a leading researcher and physician in the field of pain medicine. He has authored more than 100 publications, including an NIH-funded study on fibromyalgia for the journal PAIN. He is on the board of the PPDA, which advances the diagnosis and treatment of stress-induced medical conditions. He is now working with neuroscientists at the University of Colorado at Boulder on a neuroimaging study for people with back pain.

Past Post That Show My Journey:

This Might Hurt

Immediately after watching THIS MIGHT HURT, I emailed Dr. Schubiner to see if I could get into the program.

Facebook is stalking me! The ads I have on my “wall” tend to be a lot about chronic pain. The trailer for THIS MIGHT HURT showed up this past winter- over and over until I finally clicked to watch it. The trailer intrigued me, and so I bought the movie for personal use. However, then, I stored the link away for quite a while until I felt I was in both the right headspace and had alone time to watch the movie.

Wouldn’t you know, but I LOST my “secure link” for viewing the film. Luckily, I found my receipt email. Fortunately, the director, Kent Bassett, emailed me right back and gave me a new link. I watched that weekend for the first time.

I identified with Dr. Howard Schubiner’s patients featured in this film and was intrigued by the talk of Mind-Body Syndrome. Early on in my effort to understand why I developed Fibromyalgia, I realized that due to childhood trauma, I had lived in Fight/Flight since birth, training my nervous system to be over-amped. Dr. Schubiner’s method of treating chronic pain spoke to what I had already been doing on my own over the last three years.

The idea of having a medical doctor guiding my treatment, having a focused program led by an in-tuned, pain-educated, medical specialist made me giddy. I googled Dr. Schubiner right away, hoping to find out more.

The Patients Featured in THIS MIGHT HURT

Tony has suffered from debilitating leg pain since he was 12. In the last five years, he’s had to stop playing basketball and attending school. The dozens of doctors he’s visited can only tell him that he has Chronic Regional Pain Syndrome, which typically has no cure and no known cause. Once he turns eighteen, he is likely to be prescribed opioids. This is when he meets Dr. Schubiner.

Maureen is a writer, working on a book about the Great Lakes, an area she loves. But she suffers from severe pain in her hands that makes it hard to type and has also prevented her from getting a full night of sleep for years. After physical therapy doesn’t work, she is told that her final option is neck surgery followed by a long recovery period, during which she’d be dependent on opioids for pain management.

Kym used to ride motorcycles and worked at an auto parts supplier. But then her abdominal pain and fibromyalgia became so severe that she’s spent the last 8 years in bed rest, disabled. While she currently depends on opioids to manage her pain, and on her mother to help with the household, she hopes to return to a full life where she can play with her nieces and nephews and be of service to others.

Bio text from THIS MIGHT HURT website.

Help Near Home!

I was floored when I found out that Dr. Schubiner practiced in Michigan (where I live). I was also excited to find out that he was accepting new patients, so I sent out an email right away.

His personal response came just three days later; I was ecstatic to find out that he did in fact take my insurance. And the best part was he could see me via Video. At this point, I didn’t have my COVID vaccination, and the drive there would have been about three hours, so this was wonderful.

We set our first appointment for the end of June. Dr. Schubiner sent me 12 pages of paperwork (asking for extensive health and personal history) to send in prior to the appointment and asked that I forward any pertinent medical records to his office. Also, he asked that I purchase his workbook, Unlearn Your Pain, and read through chapter 3 before our appointment.

An image of the cover of Dr. Howard Schubiner's workbook, Unlearn Your Pain.
Dr. Schubiner’s workbook that I use as a part of my MBS treatment.

What is Mind/Body Syndrome (MBS)?

In chapter 2 of Unlearn Your Pain, Dr. Schubiner explains, “People with MBS do not have pathological changes in their body tissue: they have physiological changes that are reversible. That is, they have changes in blood flow, muscle tension, nerve-firing patterns, and brain-wiring patterns that create pain in the absence of tissue pathology. ”

One of the main questions Dr. Schubiner asked me is to tell him about my pain. My pain is all over, mostly deep within my muscles, but this summer, developing in my elbow and knee joints. However, as I explained, the more intense pain comes and goes and even roves to different spots on my body for no apparent reason. “This,” he explained, “is MBS. All your tests (which are extensive) don’t show any acute injury, yet you have pain. Not only that, but it moves around. That shows it isn’t due to any tissue damage.”

Dr. Howard Schubiner explains what Mind/Body Syndrome is and how and why the brain causes pain.

As he sees the wheels turning in my brain, Dr. Schubiner is quick to say, “Your pain is very real. All pain originates in the brain. The good news is that your pain isn’t damaging your body or life-threatening, and it can be reversed through retraining your Central Nervous System (CNS).”

Smiling older man wearing glasses at the tip of his nose, wearing a white doctor's coat (Dr. John Sarno).
Dr. John Sarno, author of The Mind-Body Prescription

TMS to MBS: A Little History

Dr. Schubiner began his work with MBS after training with Doctor John Sarno in New York, physician and author of The Mind-Body Prescription. Doctor Sarno first coined the term, Tension Myositis Syndrome (TMS) when describing the phenomenon he began to notice in his practice of over 50 years. He came to develop the TMS theory (more and more research now backs this up) that a person’s unconscious mind uses the autonomic nervous system (ANS) to decrease blood flow to muscles, nerves, and tendons, resulting in oxygen deprivation which causes pain.

In the article John Sarno, M.D., An American Hero: Marking a shift in how we treat chronic pain published in Psychology Today just after Sarno’s death in 2017, the author states, “The latest neuroscience research validates this. In patients with chronic pain, the body’s stress chemicals remain elevated, causing every organ system to respond in its unique way to the adrenaline and cortisol assault.”

An explanation of the work of Dr. John Sarno, Mind-Body Prescription.

Dr. Schubiner came back from his time working with Dr. Sarno to establish the Mind-Body Medicine Program at Providence Hospital in Southfield, Michigan. At the time of my first appointment with him, Dr. Schubiner had changed to a one-on-one approach, rather than the group approach that was shown in the documentary. Also, he now uses the workbook as a guide to the process.

Even though I was excited to start the program with Dr. Schubiner and had read the first 4 chapters of Unlearn Your Pain, the subtitle of the book, A 28-day Process to Reprogram Your Brain, didn’t sit very well with me. As I mentioned, I had done a lot of the work he suggests, including 9-months of EMDR Therapy. Over the past 3 1/2 years, I had studied extensively on rewiring the brain, and while I believe it can be done, I have not found it to be a quick or an easy thing to do.

A young woman (long, light brown hair hair) and man (short dark brown hair) sitting at a table.  Wearing blue denim button down shirts, they  calmly smile.
Directors of THIS MIGHT HURT: Marion Cunningham and Kent Bassett

Not An Over-night Process (At Least, Not For Me)

Dr. Schubiner was very upfront that for some, complete elimination of pain just after being educated on how pain works and what Mind Body Syndrome is. That is the case for the director of THIS MIGHT HURT, Kent Basset.

I had the opportunity to interview Kent and when I asked him the reason for his making of the documentary, he explained, “Much of the drive to make This Might Hurt came from my own struggle with arm pain and chronic tendonitis as a 22-year-old. Unable to type or even turn a doorknob, I was forced to drop out of college. Although I saw several doctors and tried physical therapy, strength training, even opioids—my pain grew steadily worse. It wasn’t until I had an insight into the role of the brain in triggering real physical pain that I was able to completely recover.” He and Marion Cunningham, co-directors, hope to make the MBS treatment for chronic pain more known and understood, and so that viewers can see firsthand the powerful transformations that can happen when people go through this intensive mind-body healing process. 

Kent is very passionate about his mission to get the word out. “Since I was able to overcome my own pain, I felt an urgency to help people who are needlessly suffering. I strongly believe people should be told this option exists since for many it is transformative. Many people go to zero pain, which is really rare for chronic pain. Now there are solid randomized controlled trials showing the treatment is effective, and so we think this treatment should be on the menu that doctors discuss with their patients.”

I did it! A 5-day/4-night backpacking trip: 40-miles with a 32-pound backpack and good friends:)

My post detailing the hike: Walking Through Walls: Chronic Pain Won’t Stop Me Anymore

3-Months Later: Final Appointment

Flash forward three months. This week was my last video appointment with Dr. Schubiner. Much like it began, it was a time of self-reflection, some words of encouragement, mindfulness exercise, advice, and kudos.

The last time we had met, I shared with him that I had been asked to go on a 5-day backpack of 40-miles on the North Country Trail at Pictured Rocks with three other women (my age and older). He knew that I had been able to regularly do day-hikes of 6-8 miles, and he knew that this was something that I both longed for and had fear of. When I had told him that I wanted to go, his exact response was, “I’m excited for you. I think you are making a good decision to go! Keep reminding yourself that you are fine and will be fine, whether you have pain or not.”

And so, I went. I purchased lightweight gear; my previous gear was 30-year-old technology. Also, I made two contingency plans in case I couldn’t keep up or make it the entire distance. Because the trail is along Lake Superior, it is in a straight line with campgrounds and sight-seeing spots that allow the drive-up spots periodically. With this in mind, I planned for 1. rest and doing my myofascial release along the way (allowing my group to go on ahead of me if need be) and 2. get a ride into town to a hotel if I had to bail from kind-hearted, car-visiting tourist (which there were plenty of).

While I won’t go into all the details (saving that for my next post which once written I’ll linked here), I MADE IT! I carried a 32-pound bag, hiked an average of 8-miles a day, survived sleeping on the ground, set up and tore down my camp each day, made my own meals, and socialized for the entire week. I wasn’t a “burden” to the group, although I was generally the slowest of us four. I even led a couple of morning yoga sessions. As I’m sure you can imagine, I felt EMPOWERED. A month later, and I feel not only empowered but I know that I am able to live my life FULLY despite pain.

At our last Zoom appointment, I explained the pain that I had. The first three nights had leg lock up, lower back electrical shock pain. It was BAD! However, I did what he said. I continued slowly on: setting up my tent, making dinner, and doing myofascial release with the two therapy balls I had packed with me. By the 4th night, the electric shock that I had been getting since the spring every time I “over-did-it” didn’t happen. Neither did it happen on the 5th night. In fact, it hasn’t happened again (although it felt like it might the other day after doing a full day of yard work and 16,000 steps).

Sunrise on a sandy beach on Lake Superior; the sky has white clouds, over blue skies, with yellow, peach, pink, rising at the horizon.

Promise of Life Beyond Pain

I reported to Dr. Schubiner that I still have pain, but I know that it’s not hurting me. I know that I can make plans and live my life FULLY. “Even if I’m never pain-free, I can live like this,” I told him. He and I agreed that I know the steps to take and can continue on without our appointments. However, he let me know that I can contact him at any time for help whenever I need it.

His parting instruction was that I was ready (and needed) to start looking outside of myself, get out of working 24/7 on healing-follow my passions and focus on others again.

While I will miss talking to Dr. Schubiner, I know that I have my life back. It’s not Pollyanna, positive thinking; it’s knowing in my gut that I can create new neuropathways that override the deeply embedded pain and trauma pathways. It’s going to take time. (I was right; 28-days wasn’t meant for me.) 53-years of living in fight/flight takes a bit to undo. But, I have the hope founded in facts, the will, the support, and the know-how to get there.

I realize that this diagnosis may not resonate with you. I am sharing my journey and my own experience/understanding. I would suggest that you look into it if you have Fibromyalgia, chronic pain, etc. It can’t hurt to at least learn about it to see if it may help you. This was a difficult post for me to write. I had intended to write it soon into my connection with Dr. Schubiner. However, I also know that this can get some upset and the fear of a backlash to my experience kept me from my computer most of the summer. And so, I ask you to receive this post with that in mind. I welcome, though, an honest, caring discussion.

Recommended MBS/TMS Resources

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.

Continue Reading:

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore
As I followed the best advice from experts in the management of …
Review of SUNBREAKS IN UNENDING STORMS: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole & FJ Griffitts
Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and …
teal line drawn waterlily with teal lettering of the title and motto

Continue Reading:

Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole and FJ Griffitts is invaluable to both the dweller of the storm and the observer of the storm because it shows not only what to anticipate, but how to navigate through the turbulence of invisible chronic illness. In addition, this is a must-read guide for those wanting to create volunteer groups (say in their church or community) to help those living with chronic illnesses. 

Review of SUNBREAKS IN UNENDING STORMS: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole & FJ Griffitts

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

At the top, a sun rise shining through the clouds. Beneath, a orange, brown background with lightening coming from clouds over a black city scape.  The title text in white and yellow: My Review of Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole and FJ Griffitts

I received an ARC of this book to read this past spring; I agreed to review it, but I did not agree to any type of review.  This is not a book I would generally pick up to read, but I sure am glad that I did.  I’ve purchased my own copy to refer back to.

Teal and white drawn lotus/waterlily

Advanced Reader’s Copy (ARC)

I “met” Carole via a chronic illness blogging group, of which we’re both members. I began to read her blog posts, which are sincere and full of wisdom. Through a few comments I left on her posts, we began a dialogue. When Carole was looking for readers for the book that she and her husband Joe, referred to FJ in the book, wrote together, I sent her a message that I would love to be a reader.

However, I knew once she responded that she would be sending it to me as soon as the Advanced Reader’s Copy (ARC) was ready, I began to question if I could do it. If you follow my blog, you know that I’ve been sporadic in getting posts done. Sometimes it’s due to life getting in the way of having the time, but during this time, it was because I was really, really struggling with writing.

With Fibromyalgia, I have found the greatest thing that stops me from doing what I would like is a heavy fog that fills my brain and doesn’t let me do much more than stare into space. I was experiencing this when I received Carole’s acceptance.

Carole in a power wheelchair on a wooden bridge.  Background of clouded lightening storm with sun rise and blue skies opening up.

Chronically Delayed

After not hearing back from Carol for a few months, I forgot about my commitment. During that time, the steps I had taken to get out of my fogged-up funk, began to turn my life around. As I am writing this, I have had a good month of very little foggy brain.

In May, I received an email telling me that the ARC was ready to read. Carole was dealing with an ongoing infection that wouldn’t fully clear up, delaying the publishing process. This is all a part of Carole’s ongoing journey with chronic illness. And to be honest, she and Joe have weathered so many more storms than I can even fathom. Yet, they pushed through to publish this very insightful book that aims to give a realistic understanding of what it’s like to have chronic illness and how it impacts those around you, especially your closest companion.

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Centter: a photo from 40 years ago of Carole and FJ, arms around each other, flanked by their two sons.

Carole and Joe (FJ)

FJ met Carole for the first time on a blind double date with friends in 1965. Two months later he asked her to marry him. During the six months apart while FJ was on temporary duty in the air force, they drew closer through sharing their thoughts on life, love, and family with letters that they exchanged. Soon after his return, they set the wedding date of July 16, 1966.

In the next few years, they became parents of two boys, Tom and Bill, while moving from military to ministry life. While they scraped by financially, Carole and FJ were focused on their family and faith. Life was FULL of love, humor, friendship, and outdoor adventures.

However, that easy, carefree life ended in September 1978 when Carole developed ongoing pain and severe weakness. Their unending storm had begun. But like so many of us with chronic illness, they didn’t expect that it would last or evolve to what it is today.

Carole went from being a very active woman, wearing many different hats, to one that struggled to even do the basics of self-care. FJ became her main caregiver alongside his job as pastor of a church. Together, they have spent 40-years in unending health storms (both Carole’s and his).

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Center is image of the book's cover.

Book Summary

Carole and FJ and the other interviewed families who are dealing with a variety of chronic illnesses share their journeys without sugarcoating things. However, they also don’t despair and crawl into a depressive hole.  I identify with that.  Their stories are hard to witness one hardship after another, yet they also show that they still find meaning and purpose in whatever way they are able. 

Carole and FJ compare living with invisible chronic illness to the onset of unending storms. The book is divided into three sections: Explaining the Storms, Navigating Storms, and Responding to Storms.

Bringing the reader into their homes, we witness how each family finds solutions to day in day out chronic illness issues that aren’t often talked about. Through honest discussions about the emotions from both the sick family member and the caretaker, the book explores the impact of invisible disabilities on relationships with family and friends.

One section deals solely with handling the medical aspect of living with chronic illness. Through Carole’s experience, we see how someone desperately trying to figure out what’s going on can be tossed and turned around by medical providers. Her (and FJs) 40 years of experience, demonstrates how important it is to trust one’s own instincts and push for answers.

While the storms are unending and often very tumultuous, each story shows how they persevere by diving into the deepest meaning of life and its purpose. Carole and FJ’s faith is very important to them, and they share much about their experience (good and not so) in the church as Carole’s illness ramped up.  Through this, each finds sunbreaks and rainbows along the way that fortifies their resolve.

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Center, image of Carol in a wheel chair being pushed by her son down a path through a field.

What Stood Out to Me

I love how the book is woven together with the metaphor of storms/weather. Carole and FJ each tell sections of the same story from their own point of view, the person living with chronic illness and the caregiver. Then they also incorporate a third-person narrator who kind of looks in and gives a scene, giving the reader the feeling they are witnessing the story for themselves. 

I really enjoyed the opening text/quote to each chapter and how they gave insight into the upcoming chapter. The only thing I wish they would have added would be some photos to make the stories become even more real.  Some of the things they share seem almost too impossible for a person/a couple to bear.

I kept hoping for one of those magical endings, which I knew wouldn’t happen because I met Carole through her blog. If you know Carole from her posts, then you know her story to a degree already. However, I learned so much more about all she has gone through and is still dealing with.  Yet, she still publishes posts, and she and her husband wrote this book.  

The last chapter for HOW to deal with chronic illness (and how caretakers and those who want to help can realistically do that) is the crux that most readers will want to jump to. I found it very insightful and practical.

While the topic of faith is an integral part of this book, I found Carole and FJ’s approach to be understanding and inclusive. Allowing someone like myself, who might bristle at the talk of Christianity, to not feel disconnected.

My Recommendation

Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help is invaluable to both the dweller of the storm and the observer of the storm because it shows not only what to anticipate, but how to navigate through the turbulence of invisible chronic illness. In addition, this is a must-read guide for those wanting to create volunteer groups (say in their church or community) to help those living with chronic illnesses. 

You can find this book in both paperback and e-book Amazon: Sunbreaks in Unending Storms by Carole and FJ Griffitts. If you would like to connect with Carole via her blog, check out: Navigating The Storms: Thriving in the Midst of Invisible Disability and her new website: Sunbreaks Books.


Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.

Continue Reading:

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore
As I followed the best advice from experts in the management of …
Unlearning My Chronic Pain: Mind-Body Syndrome
Those of you who have followed my wellness journey since developing Fibromyalgia …
teal line drawn waterlily with teal lettering of the title and motto

Continue Reading:

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore
As I followed the best advice from experts in the management of …
Unlearning My Chronic Pain: Mind-Body Syndrome
Those of you who have followed my wellness journey since developing Fibromyalgia …
teal line drawn waterlily with teal lettering of the title and motto

Continue Reading:

Interview with Linda Elsegood of LDN Research Trust
Linda Elsegood is one of my chronic illness heroines! She is the …
HRV and Fibromyalgia: What’s Your Heart Rate Variability?
In an attempt to better my pacing and monitor the quality of …
Men’s Health Awareness Month: Living With Fibromyalgia
During June, Men's Health Awareness Month, I have interviewed Chris Hamilton, newly …
Interview with Linda Elsegood of LDN Research Trust

Interview with Linda Elsegood of LDN Research Trust

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Linda Elsegood is one of my chronic illness heroines! She is the founder of LDNRESEARCHTRUST.ORG. Her wellness journey and discovery of the use of Low Dose Naltrexone (LDN) for her progressive Multiple sclerosis is nothing less than miraculous. Instead of going on with her life that LDN gave her back, she began a crusade to make LDN more known and provide training for both health care professionals (doctors, pharmacists, veterinarians, dentists, etc) and patients who live with a wide variety of chronic illnesses.

Linda’s LDN Experience and Founding the LDN Research Trust

As a young mother of two, Linda was a wonder woman. She worked full-time as a bank manager in addition to running her household. She admits, at that time, she took her health for granted.

December of 2000, a sudden phone call from her father changed everything. He told her that her mother had had a major heart attack. She rushed to the hospital, staying up 48 hours straight to care for her mother. Fortunately, her mother survived, but it meant that Linda (an only child), had that additional responsibility put on her. She also had to go straight back to full-time work.

Linda began to have unusual issues: utter fatigue, facial numbness, double vision, lost hearing in her left ear, and then, lost the ability to move. After several tests (MRIs, lumbar punctures, etc.), they diagnosed her with having MS. Treatment with steroids caused some unusual issues. She gained a lot of weight and her face went fully red. The numbness on her left side spread all over her body, yet it felt like she was on fire or pricked by tiny needles. Foggy brain took her over; English became like a second language. She began to talk slowly, which made it seem like she had had a stroke.

Sleep was her saving grace which at this time period, she’d sleep almost all day. During sleep, she didn’t feel the pain that she was experiencing whenever she was conscious. Things deteriorated more and more through 2003. At her next appointment, her neurologist told her that she had secondary progressive MS. He showed her out the door as he told her there was nothing more he could do for her.

“I felt like he had said, go home and die quietly. You’re an embarrassment,” Linda shares. “I couldn’t take how everyone looked at me because they couldn’t do anything to help me. So, I got the pills. I thought that my family and everyone would understand if I took them. They could then go back to living their lives. I couldn’t participate in anything. I felt like a complete failure.” However, thinking about who would find me, I realized it would be my 15-year old daughter who was taking care of me: bathing me, feeding me, brushing my hair who would find me. “I just couldn’t do that to her.”

On the many trips to the bathroom that I made (losing all bladder and bowel control), she would search on the Internet because she felt that there must be others out there in her situation. That’s when she found Low Dose Naltrexone. Those that reported taking it all said that there was nothing to lose; if it doesn’t help at least it won’t hurt.

She printed out all the information and ended up finding a doctor who supported her taking it. Luckily, she found someone who would prescribe it. Within three weeks, the fog that stopped her from functioning lifted. She began to get back her functioning and could once again participate in life.

Linda realized that there would be others out there that could use this help. She started the non-profit LDN Research Trust in 2004 and has since impacted lives all over the world (mine for one).

I am so thankful for Linda’s wellness journey, healing, and willingness to devote her life to helping others through educating and promoting Low Dose Naltrexone.

Linda’s interview in her own words: https://vimeo.com/90316823

My LDN Story: Interview with Linda Elsegood: Part 1

I contacted Linda through her website, ldnresearchtrust.org, just at my one-year anniversary of taking LDN. Here is my interview. You can imagine that I was very awestruck and nervous meeting someone I view as a Rockstar, but Linda made me feel very at ease. She also assured me that my story would be helpful to others. It is a great honor to play a small part in the work she does to get the word out about LDN.

My LDN Story: Interview with Linda Elsegood: Part 2

Just a few weeks after my first interview, I had to reach out to Linda again. She had helped me find my best dosage and timing of 4.5mg twice daily (on waking and around 4pm). After Linda mentions this (at the end of our first talk), I began to research it, buying her LDN Book 2 which I highly recommend.

The LDN Story: low dose naltrexone documentary

This was one of the first videos I watched to help me understand the history of LDN and why/how it works.

Resources Found on ldnresearchtrust.org

There are so many helpful resources on the website as well as in the LDN Facebook Group.

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.

Continue Reading:

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore
As I followed the best advice from experts in the management of …
Unlearning My Chronic Pain: Mind-Body Syndrome
Those of you who have followed my wellness journey since developing Fibromyalgia …
teal line drawn waterlily with teal lettering of the title and motto

My granddaughter says, “Sharing is Caring”;)


Continue Reading:

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore
As I followed the best advice from experts in the management of …
Unlearning My Chronic Pain: Mind-Body Syndrome
Those of you who have followed my wellness journey since developing Fibromyalgia …
teal line drawn waterlily with teal lettering of the title and motto

Further Reading:

Sending You Love: Interview With Sarah Malm on Art, Business, and Life with Chronic Illness
Through my work as a blogger and as a member of the …
Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore
As I followed the best advice from experts in the management of …
Unlearning My Chronic Pain: Mind-Body Syndrome
Those of you who have followed my wellness journey since developing Fibromyalgia …