EMDR Therapy: Rewiring the Fibro Brain

EMDR Therapy: Rewiring the Fibro Brain

Kayak in the crisp April morn.

Eye Movement Desensitization and Reprocessing Therapy (EMDR) was originally developed by Dr. Francine Shapiro in 1987 while walking through a park. She was experiencing some disturbing thoughts, but as she walked, she found that the emotion went away. As a graduate student in psychology, Dr. Shapiro was drawn to figure out why. She realized that while she was walking, she had been looking from side to side, up into the trees, then over to the side of the path, back and forth.

Through further research and working with patients who lived with Post Traumatic Stress Disorder (PTSD), Dr. Shapiro discovered that through the rapid eye movement while thinking on traumatic experiences actually lessened the impact of those experiences. Not only that, but patients were able to find peace after much less time than traditional talk therapy.

In this week’s post, I am using A Chronic Voice’s April Writing Prompts of  Springing, Daunting, Grounding, Sustaining, and Luxuriating to talk about my experience with EMDR therapy and working towards calming down my amped up sympathetic nervous system.

The Hope of SPRING and EMDR Therapy

I love spring. After the snow covered hibernation of winter, compounded by the isolation created by this pandemic, I am especially relishing new life blooming forth. I’ve been digging in the cool dirt, planting some poppies in our wildflower hill, raking up the blanket of oak leaves that covers everything in our northern wood’s yard, and going on hikes or kayak rides to monitor nature’s gradual crescendo to summer.

I love to think about how Dr. Shapiro was in nature looking around when she discovered EMDR. I’ve been going to therapy, which has been a combination of EMDR (reprocessing a traumatic memory) and talk therapy since October. While I know I’m moving in a good direction, after ignoring that my trauma-laden childhood had impacted me for 54 years, I’m finding this to be rough, tough work.

I have found a hope in EMDR combined with talk therapy for helping actually get to the crux of my parasympathetic nervous system being constantly on high. I’m one who does a lot of reading and learning and so I have a lot of knowledge for what will help me, but to actually be able to “let down” and have peace in my body has seemed so impossible. EMDR is making that actually seem possible.

Childhood trauma, attachment trauma and developmental trauma, such as abuse or physical or emotional neglect, will take longer to process with EMDR or any type of therapy. This is mostly because it takes longer to achieve a foundation grounded by emotional stability. It takes time to establish resources self-care, from which the patient can comfortably and safely process the trauma.

Robin Brickel in C-PTSD Foundation.org

The Daunting Task of Starting Therapy

It’s scary starting therapy with someone new. Whether it’s your first ever experience or just beginning with a new therapist, it’s a daunting endeavor at best. I had a few experiences with talk therapy: Acceptance and Commitment Therapy (ACT) and Cognitive Behavioral Therapy (CBT) type prior to trying EMDR. And, while I had read up on the research and the how-tos of EMDR, I have to admit it seemed like a pretty weird concept.

On my first visit, my therapist made me feel at ease. She shared how she had gone through the process (a part of her own training) and how it had helped her work through her own trauma. This made me feel hopeful and comfortable with her from the start.

It’s really important (I think in every counseling situation), that you feel validated and comfortable with the therapist. In his book Complex PTSD: Surviving to Thriving, Pete Walker suggests, “A suitable therapist will be happy to answer your question about their approach and generally talk with you on the phone for at least five minutes before scheduling a meeting. Should the therapist respond to you in an aloof, critical or shaming way, I would immediately cross them off your list and keep looking. Finally, there are unfortunately many untherapized therapists in the community. I believe it’s appropriate to ask a prospective therapist if they have done their own therapy, and to at least get a response from them that indicates that they have and have found it helpful.”

Essentially, complex trauma creates a long-lasting trauma imprint or response that impacts your brain and body enough to feel like it’s a permanent change.  Using the example above, the neural pathways of the brain connect the sight of the frown and danger, for instance. For people with complex trauma histories, the mind and body may be in a chronic state of stress and hypervigilance, always waiting for the other shoe to drop. 

Robin Brickel in C-PTSD Foundation.org

Being my trauma isn’t a single event, but a childhood of uncertainty and fear being raised by a single mother who was undiagnosed schizophrenic and bipolar, it took a few sessions for her to get enough of my story to understand how best to start.

For me, telling her harrowing stories from my kidhood is just that-a storytelling. I can tell them like I would read outloud any novel to my students. I don’t feel emotional about it.

However, I do feel it in my body. I get a heavy, tight feeling at mid sternum. I’ve had this since for as long as I can remember. With Fibromyalgia now thrown into the mix, my body begins to react by clenching of my stomach muscles and inner thighs. Often my bladder (diagnosed with Interstitial Cystitis over 10 years ago) will begin to ache and burn. Often my shoulders and neck get more taught and can begin to cause a headache.

Grounding and Regulating Exercises Before Reprocessing Starts

Grounding is a practice that can help you pull away from flashbacks, unwanted memories, and negative or challenging emotions. These techniques may help distract you from what you’re experiencing and refocus on what’s happening in the present moment.

30 Grounding Techniques to Quiet Distressing Thoughts in Healthline (click to go to the article)
Text in blue: Container Exercise with a visual of a wooden treasure box with a brass closure for Grounding and regulating
The container can be anything. Needs to make sense to you.

Container Exercise

At my first visit, my therapist made what seemed to me to be a strange request. She asked that I create a container. This container, she explained should be able to be locked securely. However, it should also be “comfortable” for difficult thoughts to abide in.

Being I’m a big fan of all things Harry Potter, I immediately went to Dumbledore’s Pensive. However, that is open, so in the end, I came up with a wooden treasure chest with iron type closure. Inside, I put a light blue velvet lining.

Because I have been practicing breathing techniques for calming down my nervous system, I imagine that I breathe in healing and breathe out the stressing emotion/thoughts into the box and the closing the lid and latching it tight. I practiced this for a couple of weeks.

Blue Text: Imagery Exercise with image of a path with aspen trees lining it.  The leaves a bright yellow and gold. Imagery is used for grounding and regulating.
Need to make the scene as
multi-sensory and detailed as possible.

Imagery Exercise

In addition, she had me try a few others. My favorite is imagining a favorite place (no people added in) that I would go to. I’ve woven together a few favorite places. I walk down an aspen tree laden path. The leaves are yellow of fall, yet it’s summer (warm and brilliant blue skies). The yellow, silver dollar leaves litter the path like Dorthy’s yellow brick road. This path leads to a secluded small lake surrounded by white pine and aspen. I sit down on the warm, sandy beach, leaning up against a warmed smooth boulder, looking out at the sparkling ripples on the lake. The sun is warming the left side of my face. Sometimes I imagine diving in and swimming in the warm yet refreshing water. I can feel the support of the water, giving me weightlessness.

Blue font: Reproccessing Trauma Image of a sad young woman looking out a window her hand pressed to the glass.
Reprocessing this one traumatic event
has made me realize the layers of guilt, sadness,
anger, and fear that I’ve lived with all my life.

EMDR Reprocessing by Sustaining Focus on a Specific Traumatic Event

After my counselor got to know enough of my story (not all) which took about three sessions and I was comfortable with centering techniques (which I practiced during that 3-week time in session and on my own), we were ready to start the reproccessing of my trauma.

Choosing the Traumatic Event

As I have mentioned, I have many memories of traumatic events from those I was told of as an infant to those I remember. However, most are pretty vague and I don’t have a lot of sensory detail nor a complete time line. Most are snippets of images, facial expressions, sounds, emotions…

I finally chose one episode that I know what happened before, during, and after semi-clearly. It was the last time I ran away from home after a fight with my mom. I walked the 5 miles into town to the home of a friend I had become pretty close with in the past few months.

This scene is laden with guilt, fear, anger, resentment, and deep, deep sadness. It was the last time I lived with my mom and sister, together as a family. My mom, arriving at the home, went into an intense rage when I wouldn’t come out and get into the car. The police were called and she ended up threatening my life, my friend’s family, and herself. She was taken in handcuffs into the back of the police car. From the police station, she was committed to the state psychiatric center.

Blue text: Reprocessing Trauma Image of feminine hands typing on a lap-top keyboard to show my healing experience that has allowed me to finally write about EMDR therapy.

How Reprocessing Works

As we touch base on whatever is on my mind, my counselor gets out the hand tappers. These tappers cause a buzzing noise and vibration. I hold one in my right and one in my left hand. She asks for me to bring up the event as vividly as I can. Before turning them on, she fills out a rating scale of sorts, asking me what level of stress I am feeling, where in my body I’m feeling it, and what emotions I am feeling as I think of it.

From there, she turns on the tappers which buzz in alternate hands at a rapid pace while I sustain focus on the event. Visualizing on this, like a meditation, my mind goes from one thing to the next. I don’t talk during this time. Often I get pretty emotional, crying and shaking. My counselor stops me to ask what I am feeling. She’s taught me to notice where in my body I’m feeling sensations and I explain this with as much specific detail as I can with words- which is NOT easy to do. I often will explain where my thoughts went to and emotions I’m feeling.

She generally doesn’t say much during this time. “Good, keep going with that. You’re doing well,” she’ll encourage. She has mentioned to me that she observes certain body language, facial expressions, etc. to know when to stop.

As we get close to the end of the session, she slows down the tappers quite a bit, and tells me to use my grounding techniques to bring myself back to calm. Using the container, slow breathing, and visualizing my happy place, I bring myself to a point that I can leave the room without being agitated.

After this, I’m pretty spent. Many times I go home and don’t do much at all. However, I always feel lighter somehow. Often I even feel a bit giddy, joyful. The first 3 or 4 weeks of reprocessing found me having more difficult days during the week. I experienced great sadness, a “fibro” flare of fatigue and fibro fog.

The previous three weeks, I have had a very difficult time writing my blog post. However, after yesterday’s session, I felt energized. I actually went grocery shopping afterwards. My husband noted what a good mood I was in. And today, I have finally written this post after 3 weeks of attempting it. I think I’m healing!

*EMDR uses bilateral stimulation, which can be through side to side eye movement, stimulation in right/left via the hand tappers, or even feet tapping. Online, you can even find special music that plays bilateral beats. You must wear ear phones to benefit from this.

Dr. Andrew Huberman supports EMDR as a form of rewiring the brain-especially with trauma.
He talks about how this therapy ignites our dopamine center for taking a forward step towards healing.

Good Therapy is a Luxury that Should be Available for Everyone

I feel very fortunate to be able to experience such a high quality, healing therapy. In the rural area I live in, there are very few choices for therapists that are within a 30 minute drive. I’m blessed with a 10 minute drive to my therapist’s office. Not only are there few to chose from, but those that are available aren’t always ones I would feel comfortable with. (See the above comment on choosing a therapist.)

Beyond the difficulty of finding a quality therapist is affording the needed sessions. I’m fortunate that my insurance covers infinite visits, leaving me with a $30.00 co-pay. So, with going every week, I’m paying about $120.00 a month. This is a cost I can handle. So many in the USA either don’t have insurance or can’t afford the co-pay. This can result in not being able to go to therapy or possibly getting lower quality help due to being regulated to public free services.

I had a friend point out that the very wealthy generally have a therapist on staff. Therapy should be a luxury that everyone has access to.

EMDR and Fibromyalgia

For those of you reading this, you are probably asking is EMDR going to help with the issues stemming from Fibromyalgia. From my own experience thus far is yes in that it is helping me let down in my muscles, but also is helping me towards calming down my nervous system which I believe is directly connected to chronic pain, fatigue, and brain fog. However, this is my story. You will have to investigate for yourself to see if you feel it might help you.

A 36-minute presentation by Gary Brothers, LCSW, Psychotherapist, EMDR Training on The Role of EMDR in Managing Chronic Pain and SUD, 2018.

Further Resources:

The format for this post is thanks to A Chronic Voice linkup. This month, the topics were Springing, Daunting, Grounding, Sustaining, and Luxuriating. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at April 2021 Linkup (scroll past the prompts to find the linked up posts).

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

Sharing is caring- at least, that’s what my granddaughter says;)

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BW image of shoulder of a naked woman who has black paint strokes, looking like bruising. Purple font: The Frozen Fascia of Fibromyalgia and Myofascial Release

The Frozen Fascia of Fibromyalgia: Myofascial Release

Shoulders and torso of a woman's naked body pained with black pain strokes, looking like bruising.  Her arms are crossed covering her breast.  Purple font: The Frozen Fascia of Fibromyalgia and Myofascial Release

Frozen Fascia

There are times when I feel like Elsa after she’s journeyed too far into Atohallen. If you don’t understand that Disney movie reference, you clearly don’t have a five-year old granddaughter with whom you spend a lot of time. Joking aside, the meat of my body feels like it’s frozen, in the tightest of sense.

Whenever my yoga teacher or guided meditation tells me to take a deep breath and focus on letting the tension of my muscles relax or “melt into the floor”, I get so frustrated. It just doesn’t happen for me. It’s taken a year of meditation to finally feel the slightest let down in my shoulders. I often got the sense from those treating me, that they have felt I was just not trying to cooperate.

Learning to Let Down

In one sense, I wasn’t cooperating because my body has been this way for so long. I just don’t know HOW to let go. I don’t even understand the sensation of it. When I was in pelvic floor therapy this past March, my therapist used biofeedback. With the sensor inserted, I was then instructed to squeeze my pelvic floor muscles as if I was trying to stop urinating midstream (Kegel exercise).

On the screen, I could see the graph line shoot up. Then, I was asked to release. The line slowly dipped down, but not as far as it had gone up. It took me quite a while to be able to fully let down; the only way I could sense that I had was through seeing the visual on the screen. Usually women need to do Kegels to strengthen; I’m the opposite (due to Interstitial Cystitis/Bladder Pain Syndrome), I need to learn how to unclench.

My Intro to Myofascial Release

A couple of years ago, my yoga studio hosted a myofascial release class. The teacher taught us how to use therapy balls the size of tennis balls and our yoga blocks to put pressure into the body’s trigger areas. At the time, I didn’t know anything about fascia, but I did know that deep-down, literally all over my body, I experience an aching pain that finds some relief when I press on it.

Up until that point, I had been doing a lot of self massage, to the point that people would stare and I would cause bruising all over my body. I even wrote a poem about this issue.

Frantic for Release

From that first exposure, I began to research. Through that research (finding articles and how-to videos), I developed my routine, investing in a wide assortment of myofascial release tools. I developed techniques for my jaw, shoulders, arms, stomach, pelvis, legs, feet, and hands. And, they did bring relief.

When “painsomnia” would hit, I’d go to the floor with my heating pad and therapy ball and spend an hour or two rolling around. I would feel better after and usually get to sleep. If after a hike, I was frozen up, I would do the same. The extreme soreness would dissipate; however, the pain never goes away and returns to its higher intensity pretty much every day.

An image of a pealed orange.  Purple font: Fascia: The 3-D Web that holds us together Gold font: Fascia Covers and Connects

Fascia-The Three Demential Web

Fascia is said to be the Cinderella of body systems. In medical school, until recently, it was fully ignored. When doing human body dissection, students were instructed to trim it off organs to be able to study the organ more readily. The fascia ending up in the waste can.

However, as research and understanding is advancing, it is now understood that fascia is in fact a full system that needs to be invited to the ball. This 3-D web that covers every organ, bone, muscle, and even cell. It is amazing how its structure differs depending on its placement and need, going from thick honeycomb to loose, gooey fibers.

The strong yet stretchy fibers of fascia are mostly made of collagen encased in a gluey, snot like substance that holds us together. If fascia didn’t exist, we would not have a shape and look much like a tent draping over its poles. Besides giving us form, fascia also helps with the smooth movement of our tissues and organs.

Amazingly, fascia not only connects every part of our body, but it is highly in sync with our autonomic nervous system as it is chock-full of nerves. We’ve all heard of cases of superhuman strength, occurring at a time of horrible trauma, such as the 2009 incident of a man actually able to lift a car off from his 3-year old daughter.

This is an example fascia and the fight/flight system working in tandem to help a human survive. It tightens and can “harden” as a response to the many nerves that run through it.

BW image of naked woman covered in grey and black brush strokes (as if in pain), arms crossed, covering her chest. Purple Text: Frozen Fibromyalgia Fascai Gold Text: Always in Fight/Flight

Fascia and Fibromyalgia

Studies have found that beyond the autonomic neurosystem of the Fibromyalgia patient being on overdrive, their fascia itself has some abnormalities. Researchers, looking at biopsies of Fibro fascia has an unusual amount of immune cells and collagen. According to Dr. Ginevra Liptan, Fibro patient, researcher, and doctor, “There is growing data that pain from the fascia generates fibromyalgia muscle pain, and this has been my personal, clinical, and research experience.”

I don’t have chronic pain in one spot. I have it everywhere in my body. When I’ve used the therapy for myofascial release, I find one place leads to the next and to the next. I liken it to a throbbing toothache that seems to go from head to foot.

From my own experience, this makes perfect sense. I don’t have chronic pain in one spot. I have it everywhere in my body. When I’ve used the therapy for myofascial release, I find one place leads to the next and to the next. I explain it to a throbbing toothache that seems to go from head to foot.

The Fibro Manual and Myofascial Release (MFR)

If you’ve been following my blog, you know that I am a big fan of Dr. Ginevra Liptan, a doctor who has devoted her career to figuring out how best to treat Fibromyalgia (FM). She developed FM when she was in medical school at a time when it wasn’t understood. She spent years, using herself as a guinea pig, to figure out how best to treat FM.

I’ve read many of her posts and watched all of her videos. However, I hadn’t read her book The Fibro Manual until more recently. One of the things she talks about is how being treated by a specific type of myofascial release made a huge difference in her ability to function.

“MFR is by the far the most effective treatment I have found to unstick the fascia and reduce fibromyalgia pain. When I stumbled across it after being diagnosed, I saw a huge improvement in my pain levels, particularly in my back, neck, and jaw. I also noted changes in the way my body felt: my tissues finally started to relax. For days after treatment, I slept deeper and woke up feeling less tight.”

Dr. Ginevra Liptan, The Fibro Manual

The word myofascial refers to the fascia that covers our muscle fibers. In her book, Dr. Liptan explains that a special form of myofascial release (MFR) developed in the 1970s by a physical therapist named John F. Barnes works best for those living with Fibromyalgia. It is different than what most of us think of as massage (Swedish or deep tissue). MFR is a slow, gentle release and stretching of the fascia that causes long term pain reduction in Fibromyalgia patients.

“Studies show that the gentle sustained pressure of myofascial release speeds up tissue healing and reduces inflammation. Standard massage techniques do not stimulate fibroblasts or address fascial tightness, which may be why many people with fibromyalgia don’t find much benefit from standard massage therapy.”

Dr. Ginevra Liptan- The FibroManual

MFR for Fibromyalgia with John F. Barnes

Looking into finding a physical therapist who was trained in Barnes’ MFR by going to his website, I found one person who was about a 45-minute drive from my house.

My Surprising Experience

After a phone discussion with Rachel Davies, PT and expert level MFR therapist at Essence Physical Therapy, my husband and I decided to make the financial sacrifice for me to see if it could be the answer to managing my pain and issues connected to Interstitial Cystitis that I have. Unfortunately, my insurance won’t cover any of the cost.

Before we met, I filled out the normal medical history paperwork and circled all the areas of my body that hurt on the give body diagram. (I wait for the comment that comes every time when a new doctor sees that I’ve circled every part available on both sides as well as front and back views.) My urologist made a referral and asked for a pelvic floor evaluation and treatment.

I was given directions to wear shorts and a sports bra for the treatment and not to put on any lotion. While Rachel told me that this therapy was Body, Mind, Soul focused, I wasn’t quite sure what all that would entail.

My Initial Visit

My first appointment was 90 minutes in length. During this time Rachel used my paper work to guide our discussion. During our conversation, me sitting on a comfortable couch in the treatment room and she sitting across from me with her laptop for recording information, I shared that I was certain my FM developed due to living in Fight/Flight/Freeze for over 50 years.

I felt reassured when she shared that her own training had healed some pretty debilitating physical issues that she had also due to trauma she had gone through. She was happy to hear that I was also going to EMDR counseling as a part of my healing (look for a post about coming this soon).

Therapy on a Table

Myofascial Release helps us bring our bodies back to those positions in time to allow the emotions to be felt, and then released fully from the body, truly beginning the path to authentic healing. Since emotions are stored in the fascia, often releasing the fascia physically, can bring up emotions stored in that area from the original trauma(s). 

Issues in the Tissues on MFR Center’s Website

In sharing about my past, I got pretty emotional. While on the table, Rachel gently placed her hand under my lower back and the other just under my belly button, near my c-section scar. The touch was so gentle, I have to admit that I doubted it could do anything. (See the video above with Barnes that explains the technique of very slow and gentle pressure and stretching.)

She encouraged me to feel any emotions I was having. She explained that our body freezes at the time of trauma, holding in the emotions that we were experiencing. While I have read Peter Levine’s book Healing Trauma and Dr. Bessel van der Kolk’s book The Body Keeps Score, I still find this idea a bit hard to grasp.

What I experienced that night has made me a believer. That night, I slept through the WHOLE night. I didn’t have to get up to go pee, not once! This is NOT usual. For years and years, I have had to get up 2-3 times a night.

Second MFR Session

My second visit was for 60 minutes. Again, it was quite emotional. As serendipity would have it, to get to Rachel’s office, I have to drive by my childhood home, school, and the streets I knew well. This has certainly brought forth memories and emotions.

This time, my chronically painful bladder felt as if it was on fire. To be honest, it was actually worse by the end of the emotional session. However, to my shock, on my drive home, the pain just vanished, like gone. I haven’t had it intensely for the past two weeks.

Pelvic Floor Evaluation

At my most recent appointment, Rachel started to evaluate my pelvic floor. I have a lot of scarring in that general region from a c-section, an episiotomy, a hip labrum tear, and five laparoscopic incisions in and around my belly button for the GERD prevention Nissen procedure.

Towards the end of our session, I explained that I was having intense tightness and pain from my inner knee to my inner hip. (A physical therapist from several years ago had thought that my left hip labrum tear could have been connected to my bladder pain due to the pain causing everything to go so taut.) Rachel had me do an exercise that caused me to shake (legs and hip) as a form of trauma release also called body unwinding.

That evening, it was noticeably less pain and tightness in those muscles!

This is an example of one such exercise created by Dr David Berceli.
An image of me in my basement meditation, yoga space.  I'm seated, crosslegged, meditating.  Purple font: Rewiring My Brain Through MFR. Gold font: New Pathways Through Practice

Home Treatment

One reason I felt that getting this MFR treatment would be beneficial, even though it’s not covered by my insurance, is that Rachel is also training me how to better treat myself at home. While I had the gist, the nuanced changes will help me to maintain progress rather than feeling like I’m starting over every morning (at least that’s my hope).

In her book The Fibro Manual, Dr. Liptan confirms my own hope through the results that she’s had over several years now. She has found that myofascial release does calm down the ampt up brain of a person living with Fibromyalgia.

“Now if I do even a few minutes of self–myofascial release techniques using a ball or foam roller, it quickly helps me relax and reduces tightness. I found that the best way to talk to my brain is through my fascia!”

Dr. Ginevra Liptan, The Fibro Manual

The changes I’ve made is to 1. Hold the stretch (using the above book by Joyce Karis, PT) for 5-minutes and 2. Use a softer (air-filled) smooth 4.5″ ball. By going quickly and causing pain by using harsher equipment, I was actually ramping up my fight/flight in my body even though it felt good in the short run.

My Free Massage & Myofascial Release Guide

This can still help you. Just remember to use softer tools and to go slowly and gently.

I am not naive. It took 50+ years to get to this place; I know that it will continue to take a lot of time and practice to rewire my brain pathways. But, I have hope. I know that I am on the right path.

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

Sharing is caring-as my granddaughter tells me:)

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Red background with a pink and white heart in top right corner; a ragged edged photo of a young woman sitting on the floor watching her one year old daughter play.

Families are Complicated: Using DNA Tests to Discover Your History

Red background with a pink and white heart in top right corner; a ragged edged photo of a young woman sitting on the floor watching her one year old daughter play.

Not Who I Thought

It was the summer of 1976, between my 6th and 7th grade years, that my mom sat me down to tell me about my birth father. Up until that time, I had considered my sister’s dad, my dad. In fact, in school, I was using his last name. My mom and he had been divorced for several years, yet I didn’t know that this was never my legal last name.

One evening, I overheard an argument over the phone between the man I had thought of as a dad and my mom. He was upset that a friend had told him that I was using his last name. He had been teased about the large number of children he had. He already had several children from his first marriage, and he and my mom had only been together for a turbulent three years. My sister was born a year into their marriage. I was young enough never to question my connection to this man. He was our dad. Even after their divorce, we would visit him fairly regularly. I always felt a fondness for this warm, funny, handsome man. It hurt to hear his anger at me being connected to him by his last name.

From that day forward I determined not to use his name. It wasn’t until my senior year (after my mom was hospitalized at a regional mental health facility) that I officially changed my name to the one on my birth certificate: Sherwood. This was my mother’s maiden name. There was not mention of a father.

A 6 month old baby (me) sitting the lap of an older woman (my grandmother).  Background red with two hearts in the top right corner.
This is my grandmother holding me.
I know that we lived with them for at least a year before my mom got her own place.

Family is Complicated

I can still remember the sunny, spring day and the park with the river running along side it. We sat on a bench as my mom shared with me about my birth father and my soon to be born little brother. I was old enough to grasp what I was told and through the years have kept some of the information in my head, but being I didn’t write anything down, I had totally forgotten the name she gave me.

What I remember is how they had met at an Arthur Murray Dance studio. She was 27, working at a high-end fashion store downtown. Malls were not yet a thing. I remember feeling a sense of pride when she said that my father was the architect of the first mall in our area, and that is what he was doing when she met him. He was traveling from his home to the area for work, so I believe he had a temporary residence in the city. She told me that he was fully Irish. Ever since then, I have had an infinity for Ireland. From the way she spoke, I could tell she knew he had a family. So, whether she was fooling herself, naive, or trying to force his hand into marrying her, she didn’t do anything to prevent becoming pregnant.

When she told him that she was pregnant, she said he gave her $1500 and asked that he be left out of it. She must have known then that she was going to go ahead and have me. I’m fortunate that my mother’s parents, while I’m sure devastated that their oldest daughter was pregnant out of wedlock, did support her keeping me, and for that first year, they provided a home and away for her to get back to work. My grandmother and I became very close. She was my guiding light throughout my childhood and into my adult choices.

During that same sit down, my mom confided that she was going to have a baby the coming fall. We (my mom, sister, and I) would be traveling around Michigan for the whole summer. She didn’t explain that she was avoiding family and friends so that they wouldn’t find out about the baby, but I later came to understand that. She also didn’t tell me who the father was, but I knew. There had been a Native American man that she had met through her work at a soup kitchen and had been trying to help get off the streets. He was into drugs (using and selling), and she felt that she could save him. We left for our tour of the state, never to see or hear from him again. At the end of the summer, I’m pretty certain in August, she had the baby, just before I started my 7th grade year; she did let me know she had given birth to a boy. She gave him up for adoption and went on as if nothing had happened, none of our family or friends being aware.

Related Readings:

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I felt that I knew my heritage by fully identifying with my mother’s side of the family.i m piaiipi

Something is Missing

It wasn’t until I had my own two children that I even thought of my birth father and brother. Being I knew the hospital my mom delivered our brother, I did go there once asking if I could talk to someone about birth records. It was a feeble attempt as no one contacted me, and I didn’t push any further. As far as my birth father was concerned, I did remember enough information to actually do any type of search.

I will say that I didn’t have any type of noticeable longing to know about either of my lost family. I have heard how some feel like a part of themselves is missing. That never registered for me. Physically, I look a lot like my mom and even her mom. Also, I had some elements of my maternal grandfather that made me unique. He had completely white hair by age 17, and I had a big blotch of white hair that developed in 4th grade. It was a stark difference from my dark brown hair. For me, and the fact that I was so close to my maternal grandmother and that whole side of the family, I really didn’t feel like anything was missing.

Red back ground with white and pink hearts to the top right corner and in a jagged edged image, a photo of the 23andMe testing kit box.
23andMe testing kit sent directly to your home.

Medical History, Mystery

That feeling changed when my husband had a heart attack at the age of 50. The doctors were surprised by his numbers: cholesterol (better than average) and his blood pressure (excellent). He was running marathons up until then and had never smoked. He did lean a bit heavy on eating cheese, cookies, and tacos, but overall he was not a candidate for a heart attack-except for his family history. His sister had a heart attack at age 40. His dad had had a few heart attacks (culminating at a quadruple-bypass in his later years). His paternal grandfather died of a sudden heart attack as he worked on his land. His maternal uncle’s had heart attacks. The doctor’s told him that he had a slight defect in his arteries leading to the heart that made him susceptible to heart problems. This was also found in both of his sisters. The doctor said to make sure that our children put this into their own medical reporting for future monitoring.

This made me think how little I knew of my own family’s medical history. I did try to collect as much as I could about my mom’s side of the family, but when it came to my dad’s side, I had to say I had no idea. It felt that this legacy of not knowing my birth father impacted not just me, but now my own children and grandchildren.

Related Readings:

Yesterday afternoon, I went down a rabbit hole watching several stories like this that are about connecting estranged family through the use of DNA testing.
You may want a box of Kleenex if you do the same:)

Efficacy of DNA Testing Kits

In recent years, DNA Testing Companies have become pretty popular. I remember watching those PBS shows about people finding their ancestors (especially, famous ones). In an article in Medical Daily the writer points out, “Genealogy tracking has become big business, with many companies charging up to $300 to trace your DNA to specific historical figures or ethnic groups in the distant past by analyzing ancestry tests.” The article goes on to say that if you’re looking to find relatives from long ago, these tests really aren’t of any help.

However, they do seem to work if you’re looking for someone that is closely related like a parent, sibling, aunt, or cousin. I know this because after receiving my DNA results from 23andMe.com just before Christmas, I found my half-sister and through her the name of my father. About a month later, I had the same results from ancestry.com.

Related Reading:

A clip of the message that was sent in reply by my half-sister: Hi Katie again...sure sound like my Dad. Please call me.  (Names and # is blacked out).  Red background with two hearts angled in the top right corner.
Reply to my initial message in the 23andMe online website to a possible relative.

Filling in the Holes

My story is similar to many of the ones I viewed on YouTube. After spitting into a tube, sending in the prepaid package, and then receiving my online results, I sent a message to the woman who by the percentage of DNA could be my aunt or half-sister. Being she was born 24 years before me, I assumed that she would be my aunt. I sent a message via the 23andMe online program to this possible relative: “This is a long-shot..,” I started out, going on to explain the few details I knew about my father.

Two days later, I received a message that shocked me and made my heart leap: “That sounds like my Dad. Call me…”

We spoke that night and while some of the details I had were slightly off, she could verify that her dad was indeed mine. She was his first child. We are still in contact and hope to talk again soon to share more about our lives and get to know each other better. Her full siblings (my half) aren’t open to connecting with me, which I understand. I’m not looking to develop a new family branch at the age of 56. However, knowing my background through this connection and the information I’ve found via the family tree search tool on ancestry.com, I feel like I’ve filled something in me that I didn’t know was empty.

I’m still hoping that I will find my half-brother. He’d be about 44 years old, and being he was adopted, I wonder if he’ll try one of these DNA tests. This is why I went on to two different sites, hoping to improve our chances of connecting.

Red background with pink and white hearts in the top right corner.  In the center is a jagged edged image of a ancestry.com family tree with green leaf icon "hint's.
This is what a family tree on ancestry.com might look like.
The green leaf off from a person’s label means there are hints as to their history.
I found this very helpful and addictive.
In my Clark/Sherwood tree, I have over 7,000 hints yet to open check out.

Developing a Family Genealogy and Medical Health History

Through my connection with my half-sister, I’m now getting some information about family health from that side of the family. Also, I did pay for the medical DNA reports through 23andMe as well. I had two noted issues to watch out for: Celiac Disease (which I found out AFTER I had good results going gluten-free) and Type 2 Diabetes.

Through Ancestry.com, I have spent hours and hours following the clues to develop a very complete family tree in several directions. I’ve always loved the thought of history, especially when it comes to family, so I have become the keeper of photos and information for my husband’s dad and mom and my grandmother. This means I had a lot of information already that helped to develop the tree. Through the unique clues option in the program, I have also been able to trace my father’s side of the family all the way back to Ireland.

However, what I’m especially excited to work on is found in 23andMe’s online tools. There is a place to collect my family medical health information in a tree format and then print out in an easy to use format to share with my children and doctors.

It has surprised me just how impacting this experience has been. I truly never thought I’d ever know this information, nor did I think I needed to. But, now that I do, I feel just a bit more complete and if I dare say, more valid. It’s hard to explain.

How aware are you about your heritage? Do you know much about your family medical history? Have you any experience with the DNA testing? I find these stories so fascinating!

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Woman, back to the viewer, looking off to the sunset (double exposure). Title in black font.

Fibromyalgia Forced Me to Look Inward

Woman sitting, her back to the viewer looking out into the sunset (double exposure). Title in black font.

Fibromyalgia has given me a gift. It has pushed me to reflect, evolve, and break up a solid foundation of untruths I’ve lived by. Trauma happens to all of us, at least that is what I’m finding as I share my story. We all have things we need to work through. Some do it sooner than others.

Childhood Trauma is being found to be linked to the development of Fibromyalgia. I think what we’re starting to appreciate is that when you have traumatic experiences as a young person, it rewires you. And the way in which you interpret physical symptoms is changed forever,’ said Steve Passik, PhD, a psychologist and Vice President of Research and Advocacy for Millennium Health.”

One way I have always gone through life is by playing the “mother figure”. From a very young age, I remember peers and elders saying things like “Katie is the mom of this group” and “you’re an old soul”. I remember being 10 years old, my mom cemented to the couch again. I didn’t know why. Six years later, she would be committed to Kalamazoo Psychiatric Hospital (and spend the rest of her life in the State’s care) for Schizophrenia and Bipolar disorder.

Cultivating a Caretaker Persona

When she was on the couch for days on end, I would “cook” meals, do the dishes, rub her feet, and scratch her back. My younger sister and I would stay out of her sight as much as possible. When she was manic, it was a crapshoot. She could be a lot of fun, bringing us to get ice cream or buying us things we liked. However, she could also be violent. Not so much physically to us, although there was some of that, what she’d do a lot screaming and breaking of things. It was scary.

As an elementary student, I’d befriend those I saw as outsiders. I’d see it as my role to help them. In 5th grade, one of my friends was Joey. He had six or so siblings. He’d come to school dirty and wearing raggedy clothes and shoes with holes. I made sure to protect him at recess (bullies saw his petite frame as easy pickings) and brought from home anything I thought he could use. My home life was not much above his financially, but my mom did obtain decent clothes (generally garage sales and donations) for my sister and me, so I felt I could help him, too.

This mother-figure that made sure to take care of those around me continued into college, my marriage and family, and into my profession as a teacher (both to my students and colleagues).

I’ve begun to realize that this role has served me. Yes, I did it to help others, but I also received what I wanted. Maybe it was a distraction from dealing with my own wounds, helping someone with theirs. Maybe it was to get the love and appreciation from the one I helped. Maybe it was to get the praises of those around me. Maybe it was to be needed. Probably, it was all of these. Still, it led to me ignoring my own needs- physically and emotionally. I would regularly get through a day of teaching, realizing that I had not had anything to eat or drink all day.

Learning I’d Been Living a Lie

This realization comes through writing. Often my hand flows without me knowing what’s going to come out. It’s as if an invisible spirit has taken my fingers over and I sit and watch as the words fly out. Often what I write is very close to the first draft’s version. When I read it, I come to understand a new insight about myself. There was little to no forethought about what gushed out. Many times I cry as I read it to myself-the knowing becomes so raw.

Below is a poem that brought me an understanding of one of the falsehoods I had lived by.

 Campfire blazing, sending orange sparks into the black sky. Title font in white.

By Katie Clark

I am looking for the light. What sparks? What ignites?
Too long have I hidden in the dark; fanning your fire.
I too need to burn; burn bright and strong.
I too need to know that who I am counts.
That just me, not what I've done for you,
Actually has meaning and worth.
It's not your fault. I wanted with all my heart to give you my-
But now, I will sit here, staring up at the stars calling out from the blackness. Striking my flint against the steel of my thigh.
My sparks fly out onto the carefully cultivated tinder.
The sparks glimmer and glow orange, going out before I can give it breath.
I strike again, showers of promise shine down on the awaiting fodder.
I don't hesitate.
I blow gently, timidly at first, hoping that my fire will burn strong and vibrant.
You come and sit next to me,
reminding me of all the oxygen I gave to you to hold.
You pass it back to me.
I blow with a giddiness that encircles those embers and brings it to flame.
I will get you sticks, you say.
I've only brought logs, and they're not ready to ignite.
Your offering brings my fire alight and bright.
Now, you nudge, add your first log. I think it's strong enough.

It Was Complicated

The relationship I had with my mom was complicated at best. I was so angry, disgusted, and ashamed with her nearly all my life. Yet, I respected her, loved her deeply, and thought she was amazing. After her suicide in May 1991 when I was 27 years old, 5 months after my son was born, I went through many stages of emotion: anger, judgment, love, inconsolable grief, forgiveness, and shame. This poem poured out of me after listening to a speaker talk of forgiveness.

A portrait of 18 year old woman, looking a bit like Elizabeth Taylor wearing an off shoulder shawl. She is staring off to the side, with a serious expression.
By Katie Clark
You defied them.
They said you were mentally ill.
You said you had hypoglycemia-
drinking raw eggs like Rocky.
They put you in a hospital.
Outwitting your opponent
with your 140 IQ.
They put you in a home
and told you not to smoke.
You went to your best friend's house and bummed a carton of cigarettes.
They let you get your own studio apartment.
You said, screw this,
I don't live because you say.
So you, let the blood run out
Soaking into the shag carpet.

A Desperate Obsession

About three months after my diagnosis with Fibromyalgia, I began to massage myself, relentlessly. The more I massaged, the more I needed to and more places that seemed to need it. My massaging was not gentle. I would poke and press as hard as I could take directly onto an aching muscle: calves, thighs, feet, thumbs, neck, chest, shoulders, upper arms, lower arms, armpits… This began to happen when I was reading, sitting as a passenger as my husband drove, when I was out for drinks with friends, while I was teaching… It began to be an obsession. Again, after some reading about Complex Trauma (childhood exposure to multiple traumatic events often of an invasive, interpersonal nature and the wide-ranging, long-term effects of this exposure), I sat down to write and this came out.

Two hands kneading bread dough.
Kneading Need
By Katie Clark
Sitting across from him, I watch his question mark gaze
follow my own fingers kneading my arm like bread dough.
Deep within the fibers of my body is an aching-
the famished maw of need.
In the shower, I see purple and brown finger painted bruises on my calves, thighs, forearms... chest from kneading the angry gnawing with no respite.
From foot to skull, silent shouts seep.
Bone to muscle to flesh-
exposing the desperate deprivation, demanding to be satisfied.
How funny it is coming to love her-pain and all.
To understand that she is just asking for what she has needed all along.

Fibromyalgia has forced me to look inward. I’m grateful in many ways. I am coming to know myself. I plan to live FULLY as myself from this time on.

What have you learned about yourself as you deal with chronic illness or issues life has brought you? What benefits have you reaped as you wade through these obstacles?

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Burnt red square with clipart image of a girl experiencing head pain, bolts jetting from her head. Title in bright burnt orange

Headache a Symptom not a Synonym for Migraine

Burnt Red square with Bright orange-gold lettering stating the title : Headache is a Symptom Not a Synonym For MIGRAINE Distorted clipart face of a girl in pain with bolts of electricity coming off her head (3 images off set with fusia, lime green and orange to emphasize pain).
Bridget thinks that too often people think migraines are just excruciating headaches
but that’s just one of the symptoms.
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Interview with Bridget Walker who lives with Chronic Intractable Migraines and Spasticity Due to Brain Trauma as an Infant

At the beginning of the month, I posted about wanting to share the stories from others who are living with chronic illness. (See September is Chronic Pain Awareness Month.) To be honest, I still write as if I’m talking to the wind, so when a message popped up in my Pain FULLY Living Facebook page, I wasn’t sure what to think. I’m so glad that I responded to Bridget Walker’s message. She truly is a remarkable woman who despite severe chronic pain all her life continues to live her life FULLY by pursuing her passion.

Burnt Red square with image of a young woman with brown hair gently smiling, orange-gold font with the quote "Your story is one of your best self-advocacy tools. " Bridget Walker from beyondcoffee.info . At the bottom in small, white font painfullyliving.com .
Bridget writes a lifestyle blog for college students or young adults who live with
chronic illness or disabilities @ beyondcoffee.info

Bridget and I sat this past Sunday, me in my office and she in her Boston apartment shared with two roommates, talking over Zoom. She had just returned from her physical therapy appointment, so that is where we started our conversation. As I looked at the smiling, relaxed, healthy-looking young woman who sat in front of me, I was shocked to hear that she has been in intensive physical therapy since January after a major flare rendered her unable to walk. As we progressed into the discussion, she explained that the severe damage to her occipital lobe due to abuse in the form of shaking at five-weeks of age caused her complete blindness, severe spasticity throughout her body, and as of eight years ago complex migraine with aura and allodynia.

The Results of Shaken Baby Syndrome

An info graphic  explaining the job of the occipital lobe showing a clipart brain with the occipital lobe colored in in burnt red, on a burnt read background.  Burnt orange and white font explaining the role of sight, determining color, accessing distance, size, depth, reading, recognizing object movement, and identifying visual stimuli in order to understand the external world visually.
Due to having six separate brain bleeds at the age of 5 weeks, Bridget lost her sight.

When Bridget explained to me about the abuse she experienced as an infant, she shows empathy when speaking of her caretaker at the time as someone who, “Probably was very overwhelmed and probably didn’t have the best coping skills.” She went on to say that when they did the MRI, they found six bleeds in her brain which meant that the shaking had happened more than once. Due to having the six separate brain bleeds Bridget lost her sight and developed spasticity, a movement disorder that causes tightened or stiffened muscles and involuntary spasms. At the age of 19, she developed complex migraine with aura which they believe is genetic. “As my headache specialist explains, the TBI likely exacerbated my migraine severity, but even without the TBI migraine was in my genetic makeup.

Bridget explaining what happened when she was five weeks old.

As we talked, Bridget told me that she could identify with the all over body pain that I experience daily. It is because one of the side-effects of the complex migraines she suffers is called Cutaneous allodynia which is pain over all her skin and especially her scalp. “Many times people think that I’m cold or aloof because I don’t want to be touched or hugged,” she confided. “It’s not that, it’s just I really don’t like being touched; it causes me pain.”

Despite living with chronic pain all the time and the worry of a migraine literally taking her down for days, she continues to pursue her love of learning. She’s finished her Bachelor’s degree with a secondary special education focus and is now attending college in Boston to get two master’s degrees: Masters in Education in Vision Rehabilitation Therapy and the second in assistive technology. She would love to work for a rehab hospital or a VA hospital to help veterans who could benefit from assistive technology.

Bridget explains why she didn’t go into the special education classroom after getting her degree.
Her focus has changed to helping others learn to live FULLY while dealing with brain injury or loss of sight.

Interview Questions and Answers

I had sent Bridget questions ahead of our conversation; however, with this being my first ever interview, I totally went off the cuff and didn’t look at my questions. Luckily, I recorded our Zoom meeting (with her permission), and have been able to take a few audio clips. I feel that listening to Bridget tell her own story is very impactful.

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Thanks for reaching out to me. How did you find my post about wanting to share other’s chronic pain stories?

Bridget talks about how sharing our stories can help to eliminate the stigma that our culture puts on us
and even the internal stigmas we put on ourselves when living with chronic pain.

I’m still very amazed that others are responding and being impacted by what I’m putting out into the world through my blog and other social outlets. I told Bridget that I feel I’m writing to the wind. So, having her reach out, really made me feel great. On her blog beyondcoffee.info, she has the quote “Your story is one of your best self-advocacy tools.” This, I believe, is so true. Bringing awareness through sharing our stories will positively change the culture in so many ways by bringing overall awareness and understanding. I have found friends through sharing my story, and this has given me a sense of community. I’ve learned so much about pain management and have received so much encouragement that all is not lost because of living with chronic pain from others sharing their own journeys. Sure, we may be preaching to the “choir” but there are a few others that are touched each time we do.

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What does your illness really mean, in terms of your day-to-day living?

Bridget tells of her first migraine with aura at the age of 19 and the impact it has had on her life.

After we had spoken for an hour and a half, we called it quits. However, I realized that I hadn’t asked her some key questions so we’ve been communicating through messenger. Bridgett explains what life with complex migraines is like as a graduate student who has to meet deadlines. “I have to take everything day by day. On my good days, I try to get as much done as I can. When you are an individual with a chronic illness, you don’t have the luxury of procrastinating. There have been plenty of times where I will start an assignment and think I could continue it tomorrow, but tomorrow comes and I lose the next five days to a severe migraine attack.” She goes on to say that her professors have been pretty accomodating. Also, after her previous educational experiences, she knew to push for strong accommodations right at the start of her graduate career. “I had a very direct conversation with my accommodations coordinator about the unpredictability of chronic illness. She didn’t really understand me, and when I said I had Migraine Disease, she was quick to tell me that I couldn’t get any accommodations for my ‘headaches.'” However, to say that Bridget has “headaches” is a gross understatement.

Understanding that her accommodations coordinator didn’t understand how debilitating her migraines are, Bridget did not hesitate in informing her that migraine is really a disease of brain function, and a headache of my attacks is just one symptom. “It gave me a great opportunity to inform her of symptoms like transient aphasia, vision changes, and numbness or tingling down one side of the body.”  By the end of their conversation, Bridget was able to receive accommodations for assignment submissions and frequent breaks.

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You have multiple chronic issues: body spasticity, cutaneous allodynia, and complex migraines, can you explain the type of pain you experience?

Bridget explains how her complex migraines affects her body her whole body.

“It stops you in your tracks,” Bridget explains about her migraines. Her symptoms include tingling down the right side of her body which is accompanied by a flickering phenomenon in my left eye, lightheadedness, and transient aphasia (loss of speech). Then, the excruciating pain hits, leaving her curled up in a ball of agony unable to function at all. This has landed her in the hospital on a few occasions. The migraine pain then ramps up her cutaneous allodynia pain. Her doctors aren’t sure why her spasticity flared up in January leaving her even unable to stand. “Being that migraine has a significant impact on the central nervous system I wouldn’t be one bit surprised if the attacks were part of the catalyst. I think there was so much dysfunction going on in my brain with my last severe intractable attack, my nervous system was probably overloaded and unable to send the correct signals.”She is now going to physical therapy twice a week to help her regain her ability to walk. Through botox injections, muscle relaxants, and physical therapy, she’s slowly gaining her ability to walk, eight-months later.

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Have you found ways to manage and or lessen the degree that your migraines impact your daily life?

Knowing her triggers has helped Bridget manage her migraines to keep them at bay much better in recent years. “Having adequate neurological care is so important. I struggled through undergrad because I was uneducated and did not know what type of care I needed. After seeing the 2017 Migraine World Summit, I learned about the field of headache medicine in neurology. It took me an additional year to take the plunge and see a specialist, and that is mainly due to the limited number of doctors who specialize in this type of neurology.” Since this time, she’s begun injections into her head, a greater and lesser occipital nerve to prevent occipital neuralgia which is a sharp pain starting at the base of the neck and shooting up into her head. In addition, she gets 31 Botox shots to her head, neck, and shoulders to help stave off migraine. “There comes a point where you do just about anything to eliminate pain.  I can tell you that decision doesn’t come easily, so when someone says ‘it’s just a headache’, I want to tell them about the lengths I go through to try and function from day today.” She has recently been trying a new FDA prescription drug called Nurtec, and so far, she’s really liking it and finding good relief. Her main over-the-counter palliative care is her ice hat that she bought on Amazon. It may look funny, but you really don’t care when you’re in pain.

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Have you struggled with getting the treatments you need due to insurance, finances, or other issues?

Fortunate to have insurance, Bridget is able to have very affordable daily prescription medications. However, her insurance does not cover the needed procedures to manage her migraine disease. Botox and nerve blocks are not covered. With Botox injections every three months, she has to pay even with supplemental coinsurance) $585 for those. Annually, just for the botox, she is responsible for $2,500. However, her hospital coverage is good which she says has been very helpful. “There have been times where I have had very complex neurological symptoms or I have become dehydrated which required medical intervention through IV infusions.”

I think another thing that has really impacted me negatively with my insurance is the prior authorization, step therapy, and nonmedical switching. “For just about every single treatment I have needed for migraine and occipital neuralgia, I have needed a prior authorization. This delays treatment and sometimes the request is denied.” Those delays or denials cost her days and days if not more of agony.

“Step therapy is an insurance policy that requires an individual to try and fail a certain number of medications in a certain number of classes before they can be eligible to try a targeted treatment.” Bridget went through some very difficult and life-threatening periods because of this. “My insurance company required that I try and fail a total of four oral medications in two different classes of medications. I was on anti-seizure medication that caused me to become very underweight, and I experienced such severe anxiety and depression. I was having suicidal thoughts daily for over a year.”

Due to losing the ability to walk after the flare this past January, Bridget had to resign from her job in February. This has had a major impact in how she is able to financially make everything work. “I am very fortunate that I have financial aid for school, but transportation and medical costs have been a problem.

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What advice would you give your younger self after all you’ve been through and what you know have come to understand?

  • Don’t let others dismiss your experience and intuition. ” I had been told by so many doctors that I was just a stress college student and that ‘My anxiety was causing my headaches.’”
  • Get educated on your illnesses.
  • It’s so important to be aware of how your diagnosis can affect you from day to day.
  • You have to be willing to have open conversations with others to get what you need.
  • It’s very likely that you will face prejudice and stigma. But sharing your story will be your greatest self-advocacy tool.
  • You are worth fighting for, and when you get so low that you feel like you can’t go on, know that you strong enough to make it through.

An Opportunity to Grow

Through interviewing Bridget and the research I did to write this post, I have grown a lot in my understanding of the chronic pain issues that she lives with every day. Through that understanding, IfI have come to admire this intelligent, resilient, and strong young woman who has advocated for herself so that she in turn will be able to advocate for others.

Related Posts:

If you would like to share your story of living with chronic pain, contact me. The more we share our stories, the better this world will be for those living with chronic pain.

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