Sun rise on a calm lake with blues, orange, yellow, and pink. Bare trees in the forefront. White text with title Choose to Make Every Day A New Start

Fibromyalgia Journey: Choose to Make Every Day a New Start

FIRST POSTED ON: DECEMBER 11, 2019 IN: WRITERS ON WELLNESS

REPRODUCED HERE and Updated ON PAINFULLYLIVING.COM 11/1/2020

Calm lake in the background and bare trees in the foreground with a yellow, orange, pink sunrise shining on the lake and in the sky behind clouds.
Good morning from Pettit Lake.
Photo credit to Pat Zammit

After a three-year slide into brain-fog and loss of focus, the inability to function in my daily life, ever-increasing areas of pain for no apparent reason, fatigue so deep that it felt like all the iron had been taken out of my blood, and spiraling anxiety, I was diagnosed with fibromyalgia.

Being I was in peri-menopause, I chalked it up to the change in hormones.

I asked my friends (teachers and those around my same age), and many claimed similar issues of being tired, stressed, anxious, and waking up as if by the alarm at two in the morning nearly every night. But when I asked if they had pain on the inside of their knees, none of them had, so thought I may have injured myself.

Or as I would stretch my shoulders and legs during staff meetings (constantly getting up when others could sit), I got a few stares because I was the only one not able to sit still for the hour.

Me, wearing t-shirt and shorts and water shoes.  I'm smiling as I balance a canoe on my shoulders.  Behind me  on the ground is my water-life-vest. Trees are in the background.
I have always prided myself for being physical and active.
I love, especially being in the wilderness.
I managed to port this canoe just for the camera, holding for a few minutes.
Kilarney Provincial Park, 2011

Just a Part of Peri-menopause?

I reported to my OB/GYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me that I was fine and just needed to stretch that area more. After doing a fair amount of research about the effects of hormones and dealing with stress, I went back to my OB/GYN when I began to experience anxiety that was interfering with my ability to handle the demands of my life.

She said that it was pretty normal to have the anxiety levels I was experiencing at my age. She diagnosed me as peri-menopause. She put me on 5 mg of Lexipro (an antidepressant), which seemed to help me, at first. Then the following start to the school year, things worsened, so I went on a higher dose of 10 mg. Even after this, I found I wasn’t able to teach (which came as naturally to me as breathing); I stumbled on my words, my sense of humor was gone, every lesson and interaction was stilted.

Family of 4: 40ish year old, smiling man  leaning in from the left, a 40ish year old woman with dark hair, smiling next to a young woman of 20, smiling and then a young man of 18 wearing a red t-shirt.  All are giving peace fingers as they ham-it-up for the camera.
My family circa 2010.

My Doctor Thought I was Just a Stressed-Out Mess

I never had an issue with being observed in my classroom; in fact, I always enjoyed hosting classroom learning labs for my district, being observed by 10 or so peers at a time while I taught. So when I couldn’t fill out my evaluation pre-observation form with any sort of coherence, I really knew something was wrong.

My children, diagnosed with ADD during college, said, “Mom, you have ADD. You’re the same as us. You need to be tested for ADD.”

So, I went to my general practitioner, bringing my husband along as a character witness because after we moved to the area, I had changed to this doctor who didn’t really yet know me. He saw that I was already on Lexipro, now 10mg, and offered to up the dose.

When I said I wanted to be tested for ADD (I had researched and thought it feasible that with the hormone changes I was no longer able to use the coping skills I had developed over my past 53 years), he conceded, saying that since you have this on your mind, we’ll have you do the test. I could tell he felt I was just a stressed-out mess.

However, when I did the computer test and 1:1 interview, I was surprised to find that I scored in the medium/high-level for ADD. After taking Vyvanse for a couple of weeks (I could tell I was handling life better), I re-did the test while on the medication and came out as functioning normally.

However, there was one thing about the diagnosis didn’t ring true to me, however; I was never scattered, unmotivated, or irresponsible during all my own schooling years. In fact, I was just the opposite. Any how, I was relieved with that diagnosis and was happy to let the Vyvanse/Lexipro combination help me through the day, functioning fairly well.

Students scattered on the classroom floor, sitting in bean bag chairs and pillows among the shelves and shelves of books, typing on their Chromebooks.
I taught 6th-grade reading and writing workshops; I loved my job.
Giving it up was one of the hardest things I’ve ever done.

The Deep, Gnawing Pain Returned and Got Even Worse

This brought me to the end of a very stressful school year of many challenges and changes, and I thought I had figured out the issue, just a touch of the ADD and menopause. However, as soon as school let out and my husband and I were in our packed car driving from Michigan to California for an extended vacation, a deep, gnawing ache that began in my legs. I had accepted the pain under my arms and the inner part of my knees as something that went along with getting older, but this was a totally different pain that seemed to be gaining in strength.

No matter how I stretched or massaged, it stayed, moving around from upper to lower from left to right. That pain remained the rest of the summer and into the start of the next school year which due to many changes was to rival the last year as far as stress was concerned.

Now, the pain moved into my shoulders, neck, and arms (again switching from left to right). By November, I was barely functioning. The Vyvanse and Lexipro weren’t doing anything to quell the brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.

Me, obviously not feeling well, laying in bed with a cold, wet washcloth on my forehead.
This was taken when I wasn’t able to go with my husband and daughter to a MSU basketball game we had been planning on for months. I just was too unwell to go.

A Relief-Finally Diagnosed

Thanksgiving break was when my GP decided to do all sorts of blood work (when I beseechingly said, “Truly, this isn’t who I am. This isn’t my norm at all.” When the blood work came back, he said, that this could possibly Fibromyalgia.

I had never heard of it. Being the teacher and learner I am, I began to educate myself. It was truly depressing all the things I read about how debilitating and life-changing this Fibro thing was. Also, the reviews on the medications like Cymbalta scared me to death.

By December 7th, I was on long-term leave. I had given in by asking for a prescription after really wanting to avoid taking Cymbalta. I started with a 20mg dose, feeling some better, albeit, not liking the side-effects.

I retired from a 32-year teaching career just after I turned 55 in May of 2019. In April of 2019, I went for a two-hour evaluation interview for a Fibromyalgia 10-week, multi-disciplinary program at a local Rehabilitation Hospital (Mary Free Bed). I was officially diagnosed as having Fibromyalgia.

At that point, I knew a lot more. (Thank goodness for those who share their journey like Donna in her blog fedupwithfatigue.com). I was relieved by the diagnosis because it meant that I would be eligible to get into the pain management 10-week program and in my mind, get back to living.

A dirt road covered with golden aspen leaves and big rocks. On either side are the white tree trunks of aspen trees next to green pine.  The road goes off into the distance.
This October, we spent time in Utah’s National Parks.
This photo comes from the Dixie National Forest.

Finding My Way

In the beginning, I created a LONG list of every issue I was having (much longer than the one below) in a note on Google Keep. I had it so I could remember to tell everything at each of my doctor’s visits. I felt like I had to prove that things were not okay and wanted to be taken seriously.

I have now deleted that note. Not that I don’t have most if not all of those things going on, but I’m now in a place that I accept what it is and am not looking for a cure from my doctor (because I don’t feel they have one).

I don’t want a medication if I can survive without one, so this is my plan of action at this point. Not that I won’t go back on Cymbalta or whatever if I must, but right now I prefer to handle the symptoms in my own way.

Issues I have that can go from light to severe and anywhere in between at any given moment:

  • Brain fog / Lack of focus: I was pulled over by a police officer the other day to my shock. He said I was swerving in my lane a bit and wanted to make sure I wasn’t under-the-influence. It could have been due to my losing focus or even to my self-massaging of my neck and jaw that I was doing on my drive.
  • All-over muscle ache: When I went to a chiropractor recently and she wanted me to mark on the body where the hurt was and what type, there wasn’t a spot on the body that wasn’t marked. Even my dang hands hurt.
  • Body drain/fatigue: I will be going fine all day and then, bam! I can’t go forth any longer. Sometimes I wake up that way and have to just rest.
  • Insomnia: About two nights in a row of little sleep; then a couple 2-3 nights of decent sleep and repeat.
  • Deep sadness: I don’t feel it’s depression because it comes and goes.
  • Aversion to strong smells, bright lights: I had always been someone who loved having the lights on and now am one constantly asking for them to be turned off.
  • Big fluctuation in body temperature: Especially in my hands and feet, which causes me to wear layers that I can take on and off-including socks, slip-on shoes or slippers, and even gloves. When in bed, I’m in and out of the covers all night.
  • Hands and feet edema: I have yet to figure out the cause.
  • Gripping of jaw/mouth: I’m constantly opening and stretching my mouth. (I’ve even started to massage the inside of my cheeks/gums with a finger.)
  • Dizziness/nausea/headache: That just makes me feel unwell. This seems to hit in bouts and spurts. There was a time last fall and through spring that I couldn’t make plans or would cancel last minute on those I had made. This has become a lot less regular and I’m starting again to plan. However, mornings and nights are not my best times.
  • Bladder pain: I was diagnosed with Interstitial Cystitis in 2000. This is known as one of the co-morbid issues with fibro which I didn’t learn about until my fibro diagnosis. Urgency.
  • Stomach Pain: I went through a Nissen Procedure 2016 for acid reflux; while I don’t have as much acid reflux, my stomach is upset whenever I eat (no matter the diet) and I have continuous pain at my sternum.
  • Bowel issues: Diarrhea to constipation and back again, never really normal. However, I think this is more due to supplements and what I eat.

Posts that share my current symptom management:

Me, laying back on a water proof bag, sitting on rocks near the shore of a lake.  I'm in a t-shirt and shorts, writing in a journal.
Writing during a break while on a week-long canoe trip at Kilarney Provincial Park.
Summer of 2011.

Why Blog?

I decided to start a blog about my experiences after first discovering what Fibromyalgia was and then that there wasn’t information out there that seemed to fully fit my own situation.

I have become pretty educated about what it is, how it affects me, the whys (as much as there can be), and how to manage it so that I can live my life FULLY, on my terms, even while having pain.

I feel that sharing my journey can give insight to others on their own, much like others have helped me. Also, blogging helps me to understand better how I’m feeling about things; writing helps me process. My posts serve as a bit of a timeline for me to remember where I’ve been in this process of healing and self-discovery.

In addition, I’ve always wanted to write. For me, this is good practice and if others take time to read and are helped in any way from what I’ve written, then, I’ve fulfilled my purpose. If no one reads it, it serves in developing what I love (writing) and helps me to process my journey.

Teal waterlily with the phrase underneath Living FULLY despite pain.
This term painFULLYliving came from my pain-psychologist.
She helped me to understand that I could allow Fibro to define me

or I could accept that it’s only one part of me.
I choose each day with the help of her family and friends to live life FULLY.

Writing and Fibromyalgia Symptoms

I write when I’m inspired. When I have something that is just needed for me to get down. So, my blog has not been regular. I really struggled the last couple of weeks, so I gave myself a break from feeling like I had to. Have-to doesn’t work well for me or the Fibromyalgia it seems. I did ‘have-tos’ for so long that it feels like my body puts on the breaks when I feel that now. However, I’ve been proud of myself this past year. I have aimed to write one post a week (by Friday), and while I haven’t made it each week, I have published a total of 68 articles.

To get out of the should and must mindset, I also work on giving myself care and grace when I don’t follow through with things that I feel I should be getting done. My writing time is a self-care, pleasurable activity. My thinking is the more I do it in this frame of mind, the more my brain will come to love taking the time to write-like Pavlovian’s dog.

I don’t focus on earning money. While I’d love to earn something through my writing, that isn’t a focus currently. So, the pressure is off that way, too. I’m starting a fiction novel that I’ve always said I would write (mostly just to myself; however, a few times I let my students know that’s what I intended to do once I had the time.) However, to be honest, that has stalled for now. Writing poetry tends to be my go-to when I need to let out emotion.

I have my writing area set up. I love to sit looking out at the lake. (I’m so fortunate to live on the shore of a small lake). I have a cup of hot tea or a cold drink nearby. My loved ones know to leave me alone (mostly). I play Pandora (if the words are flowing) on my favorite wordless, acoustic guitar station (Acoustic New Age or William Ackerman). I often would play this in my classroom as my students were writing, too. I do love sitting outside if the weather is cooperating.

Depending on my mood, I write in a journal (this is usually when I’m more brainstorming or writing poetry) or directly on my computer (usually, my blog is written directly on my computer). I tend not to do a lot of editing/revision as I’m anxious to get what I’ve written off-my-plate, so I often post right after completion. (I’m not too freaked out by others seeing my errors; however, I do reread after being published and tend to do editing and a bit of revision then.)

I’m sure as I get into writing my novel more that this will be one of the biggest changes in my writing process; deeper and deeper revision and editing. I chalk up my one and done method to my 6th-grade students’ influence on my writing (and the ADD-like symptoms I have).

To help with my fibro-brain, I do use technology a lot. I use digital notes (synced on my phone and computer) to jot down an idea I get for a blog or for my novel. So, when the ideas come, I quickly put it down otherwise it would disappear like a wisp of smoke. (I’m using Google Keep now but have used Evernote in the past.)

Me, smiling with my head touching my 5 -year old granddaughter's head as we sit on the couch together.
My goal to be fully present and engaged in every part of my life.
Connecting at the heart-level with others in my life is my purpose.

Connect at a Heart-level

Much of my teaching of writing was getting my students to see the purpose and how it could be important for each of them.

My first lesson was always for them to reflect on what they know about, care about, and are interested in. Through this, I would write alongside them. We would come to know each other on a much deeper level; learning from one another, connecting through our writing in ways we couldn’t through our everyday interactions.

Instead of wanting to impress as the goal of writing, connecting with each other at a heart-level was our focus. This freed us up from that critic who lives in each of our heads that constantly says what we have to say isn’t important or good enough. Then, when we conferred with one another (they conferred my writing as well), it was more about trying to get the meaning across as clearly as possible so that others would get us.

So, my advice is to write like a 6th grader. Write what is important to you. Write from what you know about and care about. If we do that, then we have something to share, no matter what it is; this will intern allows us to feel connected to others-one of the hardest things to do in this life.

I’ve been honored for my work this year by being recognized as a patient advocate:

In a white circle, in teal font, is the quote "Today is a gift, and I am ready to receive you." -Kathryn Starbuck, A Gift
No matter what happened yesterday, I start again. I will not give up.

Choose to Make Every Day a New Start

If you’re diagnosed with Fibromyalgia: get educated on what it is. There are good sources out there. However, make sure that you check any source you use for its reliability. There are so many sources that want to tell you what to do, what to take, how to live. Also, there are many negative voices out there.

I chose not to complain constantly about the issues that come with Fibromyalgia because I find that it just sinks me deeper into symptoms. I don’t propose just ignoring and letting positivity fix your fibro; however, dwelling on the yuck doesn’t breed good outcomes.

Use what you learn with your doctors. Most don’t know much at all about fibromyalgia. I’ve brought a lot of information to my doctors that they’ve found enlightening.

I choose to make every day a new start. There are days I throw in the towel. I try to allow it (and even if it means wallowing a bit) to let it be okay for that time. However, I do work on getting up the next day with an “I’m starting afresh”.

How do you handle the hard stuff in your life? Can you find the hope and push in every new start of the day? How do you push past the pain and difficulties?



teal line drawn waterlily with teal lettering of the title and motto
Sepia toned photo of a beautiful woman of 18yrs old (1950s) with dark brown hair (Elizabeth Taylor styled), red lips, dark brown wrap just off the shoulders, looking off into the distance.

Mother’s Day Memorial: A Mental Health Check In

As my husband and I are touring the National Park’s of Utah as our 35th wedding anniversary celebration, I needed to stop to update this post about my mom and the importance of addressing our mental health in these days of turbulence, insecurity, and loneliness. In honor of World Mental Health Day, October 10th, 2020, I share my mom’s story and my own story of mental health struggles. May we have compassion for one another, reaching out to those around to make this life just a little bit easier to handle.

Sepia toned photo of a beautiful woman of 18yrs old (1950s) with dark brown hair (Elizabeth Taylor styled), red lips,  dark brown wrap just off the shoulders, looking off into the distance.
My mom’s senior portrait; she was
only 17 years old. To me,

she looks like a movie star.

This is a special Mother’s Day. I am going to turn 56 at the end of this month. The same age my mother was when she took her own life. The last time I saw her in person was Mother’s Day 1990.

We gathered with all her siblings and their children as we always did for big holidays at my grandparents’ home. This was always a joyous and boisterous occasion with round-robin conversations catching up with everyone. I don’t remember much of this visit. Our 6-month old son and two and a half-year-old daughter kept our focus, I’m sure. What I do know is my mom and I didn’t take any time to talk just us two.

FORESEEING

Image of my mom (28), wearing an all white skirt suite (that she made), smiling and holding me at age 6 months wearing all white outfit made from the scraps of her suit. She is standing in the living room of her parents home, in the background are the photos of her 5 siblings and herself.
Mom made that jacket for me out of
a high-end remnant she bought at the fabric store.
(Notice the wall of photos in the background.)

Looking at her senior photo, the one hanging on the wall of my grandmother’s home among the five other framed photos of her siblings, my mom looked to me like a movie star. She was the second oldest. Her parents’ first daughter. To look at her portrait, no one could not have ever foreseen the turbulent, frenetic future she would have.

Just when her mental illness began, I’m not sure. Looking back on stories she told me as a kid, I’m thinking it began during her college years. However, she always had a bit of an edge to her from what I’ve been told. She was always headstrong and very independent which led her to work at some job or other from the age of 14 years on and to travel to England to study nursing.

Black and white photo with 4 young people in their twenties standing shoulder to shoulder. 1st fair woman in wool dress next to a tall man with dark suit coat and tie with light brown wool slacks.  Then, my mom with long brown hair wearing a dark wool dress, the arm of a dashing young man with dark hair, light wool suit jacket, tie, and dark wool pants.  In front of the tow is a collie dog and bushes in back of them.
Mom and her friends from her time
in England. She told me that
The man on her right was supposed
to come to America soon after so that
they would be wed, but he never did.

While my kidhood was unpredictable with many highs and lows, I have come to cherish all she strived to give my sister and me. She was a single parent who was dealing with undiagnosed mental illness. She worked hard to provide a home for us. We were very poor, but she never took any public assistance. Now and then, she’d ask for financial help from her parents, but that was always as a last resort.

She had me out of wedlock. My father, whom I never came to know, paid her $16,000 to leave him and his family alone. She put that money into buying our home which had three other apartments for her to rent out. I’ve come to understand that in 1964 that her decision to have and keep me was an act of bravery. With the support of her parents (we lived with them for the first six months of my life), she forged a life for us. She got a job at working for a doctor as office staff and soon met a man who offered to make us a part of his family. Cal and she were married (no photos that I know of), and I had my first birthday living with him and his daughter (his first wife had died from cancer).

As her mental illness began to show more and more intensely with the apex being an episode when she, in anger, punched her fist through the front plate-glass window requiring many stitches in her palm and up the inside of her wrist, he asked for a divorce citing he couldn’t put his daughter through more instability and trauma (understandable). The sad thing is no one (her husband, doctor, or family) thought to look into this event to see what was the cause. Mental illness was not talked about.

Black and white photo with smiling, curly haired 1-year old me with bib on sitting in a highchair, circa 1964  with a chocolate cake with sprinkles and one lit candle in the middle  before me.  My mom (curly, styled short brown hair, smiling to the camera, wearing a checkered matching top and Bermuda shorts  bent towards me.
My first birthday.
My mom made the cake.

But, she did not give up. She found a little log cabin on the side of a lake that she rented for just the two of us. I believe we lived there for a year. And from the photos I have of that time, it looks like it was wonderful. She continued to work for the doctor while I stayed with an older woman down the road who loved taking care of the two of us.

Color photo circa 1967, 3-year-old me in homemade bunny costume (white footie PJs with yarn pompom tail and white hood with long floppy ears, smiling to the camera (with drawn on whiskers).  In the background , a lamp and books sitting on a walnut chest.
My mom made many of my outfits
in my first few years of life including
this cute bunny costume.

My mom certainly took care of me. She made my clothes and even my Halloween costume. When we were snowed in during the Great Snowstorm of 1967, she built a snowman as tall as herself. She threw a 3rd birthday party for me. It was then that she introduced a man she had met at a singles group gathering. He was to become my step-dad the next year and soon after, my baby sister was born.

3-year-old me standing next to a huge snowman double my height.  My hair is chin length, curled under, wearing a blue headband. I'm wearing a blue corderoy winter jacket with white buttons and white wool lined hood and white mittens.  I am wearing a dress, with bare legs, but tall red boots. I'm touching the snow arm of the snowman, as if holding his hand.  He has sunglasses, carrot nose, and pebble mouth and has his other  snow arm raised up as if waving hello.
Snowstorm of 1967. Mom built
a snowman for the two of us
; note the detail in the snowman!

Joe, my step-dad, was a kind but wounded soul. He had six children of his own from his first marriage. He’d been through AA (and I don’t recall any drinking issues while he lived with us). What I do know is he wasn’t really thrilled to add two more children to his roster, especially one that wasn’t a blood relation. However, he was kind and funny, and I have warm memories of his presence. During the two years that they were married, I do remember major fights. Mostly, my mom screaming and dishes breaking. This led to their divorce-still no one (that I know of) pushed for looking into what was going on.

SOOTHING

I have heartwarming memories of my mom. She loved to scratch my back and play with my hair. On long car rides, as we listened to music or a radio drama, I’d lay my head on her gas-pedal leg (in the 70’s there wasn’t mention of seatbelt-safety), and she’d run her fingers gently through my hair. This is still an ingrained, self-soothing automatic action I do. If ever you see me sitting, my arm up in the air as I bring strands of silky, cool hair through my middle and pointer fingers, you know that I’m stressed or thinking hard on something.

Sitting on a floral-patterned couch, my mom is smiling, brown styled curly short-hair, red lips, brown dress with long white necklace. I'm next to her in an all knee-length, white 1st-communion dress and white vail with.  Chin length, straight brown hair, smiling to the camera.  My 4-year-old sister is sitting next to me, light brown hair with bangs nearly covering her eyes.  She's holding our black and white pup, his chubby belly showing.
My first communion celebration. My sister, Jean, is holding our pup on her lap.
As usual, my mom looked stylish. No one would know the struggles we had during this time.

My mom always allowed us to have pets: cats, dogs, and even rabbits at one point. This was always a special comfort to my sister. She still loves her dog like a best friend and each of her three children have grown into animal lovers.

Through our growing up years, my mom made a living by owning two apartment buildings. The one on the lake that she purchased when I was a baby and one that she and Joe purchased in the first year of their marriage. We would live in one of the apartments, and then the three of us would do the upkeep. My mom taught us what it meant to work. At an early age, we learned to weed, mow, paint window sills, etc. And then after a few hours of work, she’d tell us to stop and go for a swim or go play while she kept on working. One of my favorite memories was once her workday was done, she’d often treat us all to get an ice cream at the little shop on our drive home. Both my sister and I are still hard workers, not afraid to tackle pretty much any task on our own. We learned that from her.

UPBRINGING

The core of who I am comes from her. As I’ve indicated, we were poor. However, most who saw us wouldn’t know that there was minimal food in the house or bills that were overdue. She kept us looking pretty middle class. I came to love the hand-me-downs she’d get from the “rich” side of town’s churches more than new clothes because they were soft and worn in.

One time, she got a used bike for me. It was WAY too big. So, she put two-by-fours chunks of wood on each side of the pedals, and I learned quickly how to balance and ride it without falling. It wasn’t the banana seated beauty I had wanted, but it allowed me to get around the neighborhood with the other kids.

1960's style women's two-wheel bike; blue.
This isn’t the actual bike, but
it looked very much like this one
(except for the blocks of wood on both
sides of the pedals)!

She taught me how to drive, how to be an independent thinker, to love learning, reading, and story. She gave me opportunities like attending multiple VBS programs in the summer, going to camp, being involved in band, and taking extracurricular classes like macrame and painting. I was able to be on my school’s swim team and volleyball teams. She made homemade popcorn balls for me to bring to school. (Oh the 1970’s, when homemade treats were still allowed!) I was really popular that day in 4th grade.

My mom showed me how to be determined, honest, and caring. She encouraged me to help others. She made me face the consequences when I lied. She didn’t allow me to feel like I couldn’t do. She talked to me about college and traveling to England. She filled me with goals to one day do the same.

My mom made me feel special. When I was sixteen and kind of an outsider in my high school because we had moved to this small town only two years prior, she threw a big birthday party for me. We were dirt poor. I mean the type of poor where neighbors send over donations because they know you’re hungry. She arranged for the teenage neighbor boy to be a DJ, and we had homemade snacks and punch. That night, I felt like I had broken through the stranger-wall with the kids from my high school. I still remember feeling pretty darn cool, dancing with a boy who became my boyfriend for the next few weeks.

PANICKING

One funny but could have been a horrendous story that I look back on with awe is the time my mom took an auto repair course at the local community college. I believe she got to attend free through some sort of program. We couldn’t afford a new car, so her plan was to replace the engine in our car herself for very little money. She aced the class (did I tell you she was tested at 145 IQ) and began the project in our back yard. The part I remember is the day when the engine was ready to start. She had gas in it and all was primed to ignite.

I was in fourth or fifth grade at the time, so even though I tried to start the car, I couldn’t. So, she had me get out and look under the hood while she turned the key. We were elated when it turned over and purred. That was when I noticed water coming from a loose hose. I called out to her but was too late!

The engine caught on fire. I had some singed hair but mom without too much panic turned off the engine, got the water hose, and quickly extinguished the fire. Unfortunately, the car was a total loss. Looking back at this event as an adult, I’m amazed that none of us panicked.

A wood-paneled, light green station wagon circa 1970s parked in a driveway in front of a garage door.
I was so embarrassed to be seen in our used station wagon circa the 1970s
which mom drove in the early 1980s.
I didn’t like anyone to know the poverty we lived in.

It was soon after my 16th birthday party when she really began to let her mental illness show more and more through the cracks. Looking back, as I was making friends and groups outside of our home more and more, I think she knew she’d done all she could do to grow me.

We had begun to fight more. She was upset that I was choosing my friends and school over her. She was also sinking more and more into bizarre behavior. She’d go on frenetic shopping sprees using store credit that she couldn’t pay off. She’d only buy things that were bargain-basement deals, but she’d buy so many things (all for her dream of running a home for wayward boys). She’d spend days upon days on the couch. My sister and I would make “meals” and try to keep up with the housework. But being we didn’t have a washing machine that worked, dirty clothes piled up. By the end, dirty dishes covered the counters and filled the sinks. She’d ask me to rub her feet or play with her hair. I would do it dutifully for what seemed like hours. Boy, I was so angry at her not taking care of us. I didn’t know anything about anything back then.

One Sunday after church, we were invited to my youth group leaders’ home for lunch. During the adult talk, my mom went into a psychotic episode. (My sister and I had known of these times but didn’t know that we should seek help for her.) Due to her threatening to hurt herself, the police came. She was taken to live at the state hospital (now defunct) in Kalamazoo.

Sitting outside of a huge brick building (Kalamazoo State Hospital) at a white folding table, my mom is noticibly gained weight and her dark brown hair is now lighter and unkempt (still in her Elizabeth-Taylor style, though). My 14-year old sister wearing a bring striped top is sitting next to her, her light-brown hair in a short-style with winged bangs is smiling.  I'm standing behind my mom (16 yrs), hand on the back of her chair, smiling. I have dark, curly hair cut in a shag-style.  I'm wearing a white polo with a blue sweater draped around my shoulders.
1980-My sister and I visit my mom at Kalamazoo Psychiatric Hospital.
She was pretty vacant and zombie-like
due to all the medication that they had her take.

ACCESSING

It was there that they accessed her mental health. She was diagnosed with schizophrenia and bipolar with delusions of grandeur. She remained in the care of the state from then until 1989 when she was allowed to get her own apartment. Being I had gotten married in 1985 and was living on the other side of the state with babies and working as hard as a new teacher, we didn’t see each other a lot. The last time we were together, just us, was soon after my son was born in December of 1990. My sister and her husband were able to pick her up and bring her to our house for a Christmas celebration. It was an uneventful, calm, normal family get-together. Everything I had always hoped for.

She called me on my birthday. I always got a tensed-up stomach whenever I heard her voice on the other end of the line, thinking something was wrong. All I remember from that conversation was that she sounded happy.

It was May 31st, nine days later, that my uncle called to let me know that my grandmother, who had driven over to my mom’s apartment to pick her up for a pre-planned outing, had found her body lying in the shag carpet. While I never saw the scene, the image is ingrained in my mind based on the few details he provided. She left a simple, yet powerful note.

A note written in blue ink and shaky cursive saying: Mom, Katy, Jeanie, Everybody, I am sorry.
I cry every time I read this. It’s stored in a box along with some other mementos of my mom.

I Still Miss Her

Our relationship was turbulent, to say the least. But 29 years later, I still miss her deeply. I think I’ve lived my life trying to save those I care about through my roles as daughter, mom, friend, granddaughter, teacher, and … I realize that my greatest fear is I am not enough to save those who need saving.

It was soon after my 16th birthday party when she really began to let her mental illness show more and more through the cracks. Looking back, as I was making friends and groups outside of our home more and more, I think she knew she’d done all she could do to grow me.

We had begun to fight more. She was upset that I was choosing my friends and school over her. She was also sinking more and more into bizarre behavior. She’d go on frenetic shopping sprees using store credit that she couldn’t pay off. She’d only buy things that were bargain-basement deals, but she’d buy so many things (all for her dream of running a home for wayward boys). She’d spend days upon days on the couch. My sister and I would make “meals” and try to keep up with the housework. But being we didn’t have a washing machine that worked, dirty clothes piled up. By the end, dirty dishes covered the counters and filled the sinks. She’d ask me to rub her feet or play with her hair. I would do it dutifully for what seemed like hours. Boy, I was so angry at her not taking care of us. I didn’t know anything about anything back then.

Poem: Insubordination  Font-black  down the left side of a moss rectangle with a round photo of my mom's formal HS senior portrait accented with a pink heart and flowers.
I wrote this after one cathartic EFT Tapping Session for Trauma.

In Memorial to Joanne Kathryn Sherwood-My Mom

I ask that you talk openly with the ones around you. I ask that if you need help, you seek it. That if you can give help to someone who isn’t asking, do it. During this time of pandemic quarantine, especially, check-in with one another. There are so many who are hurting and not doing well. There’s more than just the virus that is deadly.

If you or someone you know needs help, here are a few resources (in the USA):

Update 10/10/2020- World Mental Health Day: As in stated in my post, Confession: I’m Not Well, I struggle with deep sadness along with the other issues brought by Fibromyalgia and my other health issues. I confess, there’s times I think about the peace that not existing would bring. Sometimes, that thinking can really be strong. I know, however, what devastation that would bring to my family and loved-ones. Also, I know that these moments pass and I have times of joy and utter celebration of this life. I started EMDR therapy early March of 2020, just before COVID-19 had us locked down, but stopped it just two sessions in because of the shelter-in-place order. I will be starting up again in a couple of weeks. Also, I’ve started with a Fibromyalgia Support Group (see my post Navigating Life With Healing Support Circles). Please, if you are struggling with depression, thoughts of suicide, or just feeling alone, reach out for help. It is there. This time will pass.


Posts mentioned above:


teal line drawn waterlily with teal lettering of the title and motto

It’s Harder Alone; We Need Community to Thrive

Belonging to a community has been a driving part of my entire life. As a child, I went to nearly every summer church program (partially because my mom couldn’t afford daycare) because I just loved that week of being a part of a special group: knowing the special song’s words and hand motions, sharing in stories, munching on little sugar cookies and red punch around a small table with this temporary community. Working as a camp counselor, not only did I find a temporary community to live with, but I met my best friend and my future husband. In college,I connected to a small group of friends (most I still have today) and sought out others from my classes that shared similar goals. I studied to become a teacher; my schools had been major sources of community for me growing up and I longed to continue to be a part of it. When my husband and I chose the home we’d live in for our retirement years, I fell in love with a new development that was built on a former site of a summer camp, creating a built-in community of people to connect with.

Emma Seppälä Ph.D.explains in PSYCHOLOGY TODAY “Connect to Thrive”, 2012 “Social connection strengthens our immune system…, helps us recover from disease faster, and may even lengthen our life.”On an emotional level, “People who feel more connected to others have lower rates of anxiety and depression.”

People who feel more connected to others havelower rates of anxiety and depression.” Too many of us pull in and away when we aren’t feeling well.Seppälägoes on to explain that a study conducted in 2006 showed that social connectedness is rapidly declining in the lives of those living in the United States. The report states that in 1985 Americans had on average three people they felt connected to on a deep level and in 2004 that number dropped to only one, with 25% of respondents saying they have no one to confide in.


Nearly, one year ago to the day, I was yanked from my school community, after 32 years, very unceremoniously. That’s the way I felt when I went onto long-term leave and then into retirement last June; my whole life as an educator just ended. It was really difficult knowing I wouldn’t be an integral part of my teaching community anymore. (I still am having dreams a few times a month where I go into school, knowing I no longer work there, trying to give my input on the things I know are going on, then realizing that my ideas aren’t needed any longer.)

Not only did I abruptly stop being a part of my teaching community, but I also began to really pull away from everyone. Mostly, because I felt so horrible, I just didn’t have anything to give to my family and friends. A new trend began, me canceling plans to go out, to getting together, to calling, to responding, even to posting and responding on Facebook. And within my solitude, I felt invisible and increasingly sad.


The night before Thanksgiving last year, I was invited to a breathwork workshop at a yoga studio in a town near 20 minutes away from my home. I felt like @#$%, but the task was to get there and then lay down, bolstered by support pillows and wrapped in blankets like a cacoon. I didn’t have it in me to drive, so my husband drove and visited with our daughter who lives in that town.

Joan, the owner ofBranch Out Yoga in Fremont, MI,
intentionally creates a place for community.

Upon walking in the yoga studio, the sweet smells from the essential oil mixture and the brewing tea greeted me, calming me. Inside the entry, I was welcomed by several smiling, chattering people scattered throughout the India-infused, boho space. I felt like I was walking into someone’s home.

Breath Work Session with Panacea Breath led by Candence and Ross Zigenthaler.

At the end of the three-hour session, I felt more energetic and positive than I had in a while. I vowed to start coming to this place and be a part of this community. Even though it took me a while to get consistent in attending, I began to feel the support and positive energy from the people through this place. The owner of the studio purposefully sets up a place that would keep people there after class to share in community through talk and tea.


Slowly, my husband and I are making new connections in communities that we are interested in being a part of now that we are retired. We’ve met other couples interested in getting out-of-doors: hiking, kayaking, snowshoeing, etc. Also, as the development that we live in has more homeowners living here, we are beginning to get to know them through organized activities that generally involve food. Recently, I’ve connected with a few other writers who have shared some nuts and bolts of the process of writing, helping me to feel like writing is something not only do I want to do but am able to do.

Through my blogging, I’ve become connected to others in the Fibromyalgia and chronic mental and physical illness communities. I find that communication through online forums is very important for me. At times, I’m learning something new; other times, I contribute something to a discussion that helps someone else. In the past couple of weeks, I’ve even gotten some much-appreciated kudos from others in the community for my writing, which really helped to get me back at the keyboard.

When we are in pain or not feeling well, often our first reaction is to pull away from all our communities. I know it takes great energy that you just don’t have. However, as I have learned both from my therapy and from my experiences, the more I pull away the darker I get. The more I push in, doing only what I can at that time, the better I begin to feel. The light from others is contagious.

So, at this time of the holidays, when things can get really overwhelming, I suggest that we connect with those communities that build us up. And that we keep this going throughout the year.

How can I connect with a community when I’m not feeling well?

  • On line communities in areas of your interest or experiences can be really good. (For me, I work to only participate in ones that are uplifting. I want to share the real, but I don’t want to dwell in negatives all the time which a few groups I joined and then dropped did.) For me: The Mighty (mental wellness group), FIBRO CONNECT on Facebook, North Country Trail Community on Facebook, and Twitter (following only those I want in my community: teachers, librarians, authors, and those with chronic pain).
  • Pen-pal or phone-pal arrangement can reconnect to those you can’t see regularly. For me writing back and forth (generally online) with a friend is really fulfilling. Recently, I connected back with my friend by setting up a weekly call date (being she works at home we generally connect in the morning for about an hour). I can’t say how wonderful that sharing time is. Talking using video (whatever tool you chose to use) brings you loving faces along with your conversation.
  • Ask around about smaller groups in your area that do things you are interested in. I’ve found wonderful groups of people who love to get outside, paint, play the ukelele, eat vegan, etc. (Many share rides, etc. if you aren’t up to or able to drive.)
  • Stick close to your closest family and friends. They totally get it if you’re not feeling well. My family has always done impromptu get-togethers where we either meet at a restaurant or go to someone’s home with each of us bringing something to eat. Very low-key and low-stress.
  • Go to businesses that create community: yoga studios, some gyms (especially if you go to the same classes at the same times), even some restaurants (early breakfast groups), and some shops (art studio, knitting & quilting stores, bookstores, etc.) that allow you to hang out and learn from one another.
  • Volunteer (this can be done on a regular or more flexible schedule which I like) for places that build community: hiking trail care groups, homes for senior citizens, schools, libraries, etc.

My wish for you (and for me) as we are beginning this time of winter hibernation is that we stay connected. Through our communities, we are revived, strengthened, honed, and loved.

What are ways you connect? What are your obstacles? What are the benefits you get by being connected with others?

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 some times I have to listen to my body and am
not able to follow through as planned. Thank you for your understanding.



Knock on Wood!

Superstition and fate tend to take power out of our hands.
Hope is the action-taking when we chose a positive future.

I don’t view myself as superstitious. But, I’ve been known to say, “Knock on wood,” now and then when I want to stave off something bad after declaring something good. As I’ve explained, my mom who had bipolar drilled into me at an early age that just as things are going well, life/fate will slam you with something equally not good. When I was a child, and actually now and then still now, I felt that there was someone watching over me, guiding me. That inner voice of mine always letting me know the choices I should make. Writing this blog comes from that inner voice, and I feel it’s there that my resilence through hope began.

Last Saturday, as my husband and I sat and ate our dinner out on the deck in unusual peace, he brought up that he noticed I had been doing really well the past few weeks (not pleading for massages or whimpering in bed). I agreed. As written about in my last post, I really was feeling great. I got up with energy and didn’t have too much pain. I was able to participate in all that I had planned and able to fall asleep at night. I didn’t even take Bayer Back and Body! I had really been this way for a good 3 weeks.

As I responded, I said, “Yes, I’m really doing well-knock on wood.” However, there was no wood on our composite-planked deck or in the glass and metal outdoor table and chairs. I gave a little laugh as I knocked on the metal armrest. A little bit of doubt or even fear flashed in my mind. (The saying knock-on-wood came from the long-ago belief that spirits lived in the trees; the first knock was to say your wish and the second for thanking the spirits for granting it in advance.)

Much I have read about the brain, indicates that when there is despair about the pain and symptoms of fibromyalgia, the pain lives up to the expectation, and when there is hope that the pain will go away, the pain tends to subside.“Belief and expectation — the key elements of hope — can block pain by releasing the brain’s endorphins and enkephalins, mimicking the effects of morphine. In some cases, hope can also have important effects on fundamental physiological processes like respiration, circulation, and motor function,” explained Dr.Jerome Groopman‘s in his bookThe Anatomy of Hope. I don’t know if that tinge of doubt took over in the night, but Sunday, I woke up brittle and pain-filled.

Since then, I’ve had more pain than those three weeks. I can’t really put my finger on the cause. Most likely, being I had less pain, I didn’t do the stretches and breathing as much as I had been doing. So, I’m back using my strategies of hotpad, hand massager, slow stretches to get out of bed. Then, yoga class either at the studio or at home using Gaia.com.Breathing consciously is a constant practice during my day, but I am taking time now and then to do the actual breathwork by lying done for 15-60 minutes while listening to my William Ackerman station on Pandora, which is one form of meditation.

My pain reminds me to take care of myself. I don’t do it naturally. That’s been a huge lesson in my Fibromyalgia journey. And by taking care of myself, I’m then able to be there for my others. What I do know is that I continue to have hope that I can live my life. I can make a difference in my path even while life gives me variables that seem to be roadblocks. This is a part of my resilence that has been a part of me as long as I can remember. I always knew my future would be better. (That inner voice that I felt looked out for me.)

In the article How Hope Can Help You Heal, Dr. James Lopez, psychologist and researcher states, “Hopeful people conjure a vision that sustains them, that causes them to show up for the hard work and accept setbacks…They make an investment in the future that pays off in the present: in the way they eat, exercise, conserve energy, take care of themselves and stick to their treatment plan.”

The article goes on to state that hope is not wishing. Wishing is passive. Hope takes steps:


•Maintaining identityby continuing to participate in activities and relationships that help patients retain a sense of self outside diagnosis and treatment.
•Realizing communitythrough formal and informal connections that help patients understand they are not alone in living with disease. This community is made real through conversation, visitation, consultation, and participation in daily activities.
•Claiming powerby taking an active role in treatment by setting goals, self-advocating, monitoring and maintaining one’s own health.
•Attending to spirituality, activated through religious, spiritual and other contemplative practices.
•Developing wisdom, which involves both gaining pragmatic, medical wisdom derived from one’s own experience and finding ways to “give back.”
I would add one more, taking note of the daily small moments that bring you joy-taking time to be grateful. Many have heard about starting the day with a gratitude journal. I have made lists in the past. But that can get a bit automatic and repetitive, maybe insincere. For me, I’m working on stopping (like when I do my conscious breathing) and noticing the moment, relishing in it and acknowledging how blessed I am within it. The moments like while driving with my daughter, reaching over and holding her hand because she shares her deepest self with me. Or when my cat Scout, comes in the darkness of the early in the morning to lie down in the space next to my face, purring contentedly. Or when my granddaughter sits on my lap, cuddling us both in our softest blankey, to read a book or watch a “kitty vs balloon” video on YouTube. Or when, in the middle of the night, my husband and I both turn in the same direction in a wonderful synchronization. I want to take time to stop and purposefully notice these “little” blessings. They bring me hope.


Last week, my husband and I helped our daughter paint the outside of her house. I used the medium height ladder for my sections. I would move it down the line as I progressed. Now and then, I would need something like the spill rag or my water bottle which would mean walking under the ladder would be the easiest way to get it. I found myself debating, Do I want to chance it? The first few times I chose to go around the ladder. Seriously, thinking, Why tempt fate? But then, I chided myself that I was being ridiculous. So, I decided to throw caution into the wind and walk under the ladder. To me, that is one step in having hope vs wishing. Fate does not have the end say. I will continue to have active hope.

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 some times that
I have to listen to my body and am not able to follow through as planned.
Thank you for your understanding.