Come So Far! Last Summer to This

Last July found me STRUGGLING. I know what you’re thinking, But we were all so happy and carefree last summer. COVID-19 problems aside, I am out of the hole that I had been in since before my 2018 diagnosis of Fibromyalgia.

July 13, 2019

I was having withdrawal symptoms form going off of Cymbalta.

“I have not felt this bad since I had viral meningitis (I’m not as bad as that time in the emergency room, but man, it’s reminding me of it). Since the purpose of this blog is for me to record my true journey (for healing through the writing and remembering where I’ve been) and to possibly help others who are dealing with Fibromyalgia, I’ve decided to write this (as I can today because doing anything and nothing are both really difficult right now).”

Painfullyliving.com I FEEL LIKE @#$#%

My Other Posts From July 2019

This was a very low time for me. The year prior had brought me to my bed which then lead to a diagnosis. The only option I was given to have relief from the pain and other devastating symptoms of Fibromyalgia was to start on Cymbalta. While it did help me, it had side effects and long-term addiction that I was not willing to deal with. And so, I stopped taking it, mostly how the doctor told me. I’ve since learned that I’m very affected by any medication (OTC, Herbal, or Prescription), and so, now I know that what everyone else considers easy will not be for me.

A New Me

First time backpacking since I became sick. It was a wonderful two days.

This July has brought me back to myself and to the joys of summer that I had missed so much. Certainly, I’m having to pace more than I used to and be cognizant of what my body is telling me. I now must take care of myself. If I don’t, then I will have a day or more where my body will hold me down to attend to rest, hydration, nutrition, meditation, stretching, myofacial release, sleep, etc. My family, friends, and myself have come to understand that I will do things in smaller chunks over a longer period of time. And while that was not at all how I functioned (non-stop go without eat, sleep, etc. to get something done), we all have come to know I can now plan and participate within my wellness protocol.

Two weeks ago, I was able to camp for a few days, adding in a hike and swim each day, with my friend group we lovingly call Wander Women. My husband, who had just gotten back from a week of hiking in northern Michigan was quick to set up an overnight hike/camp trip on the North Country Trail about an hours drive north of us. While I was useless in helping with the preparation (too worn out after having a wonderful sleepover with our granddaughter), I was excited to see if I would be able to carry a pack, hike, and sleep in a tent with a pretty thin mat between me and Mother Earth.

We hiked in 5 miles to find a wonderful spot to set up camp for the night. We saw no one but three women passing by on the trail for the two days on the river trail.

It was a wonderful trip. I will admit I didn’t sleep well. We will be replacing the thin mats for the next time. We’ve decided that hiking to a spot, setting up camp, and then hiking from that base will be our way of going from now on. That provides enough chance to rest and recuperate, and it isn’t as difficult to hike since we don’t have the pack on all the time. By the time we headed back on the second day, I was definitely hitting my limit. However, after getting back to the car and eating dinner at a restaurant with an outside patio, I felt much better.

Looking Back at the Road I’ve been Down

The past few years have been one of growth and healing, albeit never a straight one. I’m so grateful for all the help and healing that I’ve received from so many: my family and friends, yoga classes, massage therapists, physical therapists, occupational therapists, doctors of a few different sorts, meditation courses, fellow chronic pain bloggers, my counselors, those friends I’ve met in Fibro, LDN, and chronic illness Facebook groups, my Wander Women groups (one from work and one from the town I live in), You Tube videos, text and audio books, music, and so much more.

NEW BLOG WEBSITE! My First Post on WordPress.com

This is my first blog post on my new website format. I’m learning a lot about web design over this last year and have much more to go. I’m feeling proud and excited for what I might do with this new love and skill.

With all of this week filled with hiking, family, and building a new blog, this post will be less pulled together than normal. I just wanted to share the progress that I’ve made. I’m including (from My Recommended Resources page of this site) much of what has helped me this year along with links or further information. I do believe that it’s all of these things/people/resources that have brought me to where I am today. I’m not naive enough to think that I won’t have many twists and turns and ups and downs (just got diagnosed with a rare deformity of my carotid artery called Fibromuscuar Dysplasia-not at all related to Fibromyalgia), but I want to relish where I am right now anyhow. If I’ve learned one thing this past few years (and since COVID-19’s arrival), what will be will be; it’s my choice how I react.

  • Low Dose Naltrexone (Newest addition-55 days in. Started at 0.25mg and am now up to 2.5mg and still titrating up to find my best dosage amount). Sleeping pretty well without any other help; clear headed most days all day; less pain overall, more energy. My first post: Tentatively Ecstatic: My Experience with LDN Part 1 I plan to write Part two soon.
  • CBD/THC 1:1 Oil- This didn’t seem to help with pain, but sure did help me sleep soundly. I was taking .25mg sublingually before bed. I stopped because the LDN seems to be helping with it and my GP expressed issues with it (even though I have a medical marijuana card and it’s now legalized even for recreation in MI). My post: Out of the Rabbit Hole: CBD/THC Oil for Fibromyalgia
  • Meditation: I have continued with meditation after finishing the Palouse Mindfulness 8 week free course online. This is making a big difference for me. My post:The Danger of Distraction: Turning Toward Pain to Eliminate Suffering
  • Yoga and Breathwork: This is an ongoing, continuation practice of 20 years. However, I’m having to learn that my practice looks different now. I had always strived too much to get to that perfect form of a pose often injuring myself in the process. I’m doing much more Restorative, Yin, and slow yoga practices these days. 
  • Supplements: Magnesium Malate/B-12/E/D3
  • OTC: Bayer Back and Body (for headaches and pain) & Low Dose Asprin for FMD
  • Prescription: Vyvanse (I was diagnosed with ADD one year before my FMS diagnosis; I do think that the ADD symptoms, though, are more connected to the FMS issues.) 
  • Hot pad, ice pad, Epsom salt baths, and hot tub.
  • Massage & Myofacial Release: Professional massage & myofascial release, myofacial release @home using foam roller and Yogu Massage Balls, and Rhenpho Massage Gun
  • Gentle cardio: walks, hikes, bike rides, and swimming 
  • 10-week Interdisciplinary Pain Management Program through Mary Free Bed – My Post about this: Just Breath and Other Ways to Rewire the Pain-filled Brain
  • Diet: I haven’t made a ton of changes. This is an area where I really hate being deprived. I have given up on dairy. I eat way less gluten (doing a lot of substitutions). I intake food with high acid much, mostly because I hurt immediately after. I rarely drink carbonation and don’t drink much caffeine. I tend to lean vegan due to the no-dairy. However, I do eat some poultry, eggs, and fish. However, I just can’t cut out tomatoes.

I know that I am so fortunate to be where I am right now in regards to my health. I have friends who live with chronic illnesses that are really struggling right now, especially because of COVID-19. Many who can’t get around due to being very at risk if they were to get the virus. Those who have lost their form of income or don’t have health care. Some are dealing with depression, and others are hurting in due to their relationships hitting some very difficult times. You are on my heart. How are you this summer?


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:)

RELATED POSTS:

What Greater Gift Than Love? Grief and Honoring

 
 

I’m so sad. More than I ever expected. I have never professed to be the animal lover of our family. But I have gotten especially close to Scout, our tiger kitty, in the past several years. He’s been my cuddler and nudger out of bed. Today, we had to have him put down. He was 16 years old and was the best companion our family could have asked for. He was dropped off at the end of our driveway shortly after his birth with a very bad eye infection. We got him healthy and he’s been that up until a couple of years ago. You are going to be so missed, Scouty. Thank you for loving us so much.

 
 
 
As it’s been the past two blog posts writing responses to the five prompts from A Chronic Voice’s Linkup Party for People with Chronic Illnesses, July 2020 has found me completely changing what I was going to write about because something else is heavy on my heart. 
 
The past couple of weeks have been ones of loss for my family.  First, my Uncle Bill who was a surrogate father and now our Scout, our silly tiger kitty for the last 16 years. Today, I write from grief that comes from deep within. 
 

 

BOTHERING

Every morning as if he could tell time, Scout would hesitantly (at first) nudge his wet nose into my ear, purring like a little motor. The morning routine was started.  I then, rolled over, pulling the covers closer to covering my face, but often leaving one arm out above my head, hand dangling.  He’d get a bit more persistent, butting my hand over and over with the top of his head. 

 
As of late, that isn’t enough to get me fully awake. I roll over again.  So now, he knew he had to get tough. Scout would leave my head and walk over to my nightstand, knocking one item off at a time. First, he would paw my little statue of the Eiffel Tower I had actually bought on Kel and my 25th anniversary trip to Paris. I would hear the metal slide, slide, slide until it plunked to the carpeted floor below. He would then come back to my head, purring into my ear to see if I was going to get up. I had begun to ignore this first attempt, so he would go back to bat the next item to the floor.
 
Kelley and I feigned being bothered by this morning wake-up, but really it was nice knowing we were needed and not forgotten. 
 

 

DEMANDING

It was my 40th birthday, and the kids were outside playing with the balloons from my party. There was a tiny little orange dot at the end of the driveway. The cars zoomed down our street not even noticing that a kitten lay helpless in the gravel. Andrew and Chelsea, 15 and 13, were outside with the neighbor kids when they heard a tiny mew demanding to be heard. They walked nearer to the end of the drive, with the feeling that there was something that needed their help. When they reached the orange fuzzball, they found Scout, eye glued shut from infection.

“He can’t be more than two weeks old,” my husband said as Chelsea cuddled the shivering kitten in her arms.

“Can we keep him?” Andrew asked, the longing in his blue eyes. He knew that we traveled too much to have a dog, but he was hoping that we’d allow them to keep the kitten. Kelley looked over at me with a Well, what do ya think? look, and I shrugged. “I guess…, but you guys are going to have to take care of him.”

 

 


NOURISHING

As Scout grew, he became more and more a person. His wacky personality was a favorite of conversation. He got a bit chubby, loving to eat like he did. However, he was also very energetic and athletic. A few times a day, he’d stampede through the house like an orange streak, zipping up the stairs then back, skidding across the kitchen floor. He’d chase his own wily tale as is the snake-like thing eluded his every move.

One of his most incredible feats is when jump to the highest banister in the house, defying death as he hefted his belly up onto the balance beam. Our three-story home had an open banister from the top bedroom level to the living room. Scout made like a drunken, clown on that highwire beam above. It was amazing that he never fell!

In addition, Scout nourished each of my children’s hearts. He gave love to each of them. Scout made sure to sleep with each kid equally during the night. He’d cuddle one and then leave to cuddle the next. Chelsea and Andrew each felt that he loved them best of all.

 
My husband and son brought home Willow,
a black long hair kitty, a few weeks after we
found Scout.  The two have been together ever
since.  Willow is going to need a lot of extra
loving with his cuddle buddy gone.

 

TOLERATING

I’ve never been a “pet person”. My little sister loved animals much better than humans, she still does. Me, while I may appreciate them now and again, an animal just isn’t going to win my heart. So, for me, having an extra being to care for was just one more responsibility to this full-time working mom’s life. It wasn’t that I didn’t like Scout, it was more that I saw him as a chore on my to-do list.  And so, for many years, I was just tolerating the extra work of scooping out his litterbox, cleaning up the hairballs, or filling his food and water dish.  I didn’t really consider myself one of his companions or he mine.

The years went by; Andrew and Chelsea got busy with their adult lives. Little Scout wasn’t on their minds as they moved out to college and the lives beyond our home. Kelley and I filled the food and water dishes. Kelley changed the kitty litter. Scout began to lay on Kelley’s legs every night as he sat watching the TV. 

 
Little by little that lovey fella became my buddy, too. When I was down and out, laying in bed and feeling lonely due to a Fibro Flare, Scout was always nearby.  His warmth often eased the pain in my gut as this was a favorite place for him to lay.  
 
In the past year, as I began to get stronger, pour Scout was getting thinner and thinner. We tried special food and medicine, feeding him both morning and night.  But, after we got back from our four-day trip this past week, we knew he couldn’t keep going on as he had been.
 
 
My aunt and uncle had just come
home to Michigan from quarantining in Arizona, 
so I made this video for him of 
me playing Take Me Home, Country Roads.

 

 

TELECOMMUTING

The last time I saw my Uncle Bill was two days before he passed.  He was lying in a hospital bed in a facility that cares for the elderly.  His mind and body were giving away to dementia.  He had stopped eating.  He kept his eyes closed.  
 
I arranged a Skype call with the activities director.  She brought in her iPad.  Seeing his drawn features and closed eyes, I knew it would be my last time to see him.  I had practiced most of the quarantine on the old wooden ukulele my aunt had given me.  It had been his.  He told us, kids, the story of when he would go and play the old tunes for his mom and the other residents.  Even when his mom didn’t know him anymore, he said she recognized the songs.  And so, I played Take Me Home Country Roads by John Denver.  It was hard for me to make it through without crying.  Uncle Bill never looked at me, but he did grab at the iPad and pulled it closer to him.  All I can imagine is that he wanted to let me know he heard.  I told him I loved him.  And then I asked the nurse to make sure to play some upbeat music.  He loved music. 
 

Grieving and Honoring

And so I grieve.  But, I do know that I loved both my uncle and my Scouty well.  And, I know that they loved me.  This is what it means to live FULLY.  So, I will allow myself to feel the pain of losing them both during these last weeks.  I honor our connection through my memories.  I will continue to practice the ukulele; it sits in the corner of my living room. Uncle Bill, his smile, and music will remain a big piece of my life. I will think of Scout every time I begin to wake, honoring him by living each day with uncompromising love and honesty. 
 
Those of us who live with chronic illness know what it means to mourn loss.  Those of us who have dared to love, know what the ache when we lose those we’ve let into our lives. “We bereaved are not alone. We belong to the largest company in all the world–the company of those who have known suffering.”-Helen Keller
 
 
 

The format for this post is thanks to A Chronic Voice link-up. This month, the topics were searching, hoping, traumatizing, honoring, and responding. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at July 2020 Linkup(scroll past the prompts to find the linked up posts).

 

Thank you for visiting my blog today. 

 

 

 

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:)

Keep Reading:)

Only Love Can Do This: Healing the Chronic Illness of a Country


I write today filled with sadness at the state of my country. I had in no way planned to write on this topic (albeit, I did plan to write on the Chronic Voice Link-Up prompts this week). But there’s nothing else in my mind and heart at the moment. I ask that you don’t stop reading because it’s not a post focused on chronic illness. I really believe it is. It’s a post about the chronic illness of a country. And just like the warning signs which my body has given me that something is awry at the core of my being and has to be addressed before it fully takes me over, so too are the glaring ominous events of this past week signs that our country is rotting from the inside out. 


As people with chronic illnesses, our surroundings greatly affect us whether it be the weather, the physical structures’ amenities or lack thereof, or the emotional atmosphere. I know that emotional stress is my biggest symptom contributor with physical overexertion a close second. Reading and viewing the events of these last couple of weeks puts my system on high alert status. As a mom, grandma, and retired teacher, my heart aches for the loss of a young dad, father, brother, and son. As a middle-class white woman, I feel shame that I am a part of the ongoing problem, anger at the utter heinousness of the crime committed by those sworn to protect our citizens-all of them, and despair that this is still such a deep-seated issue in my country that touts its inclusiveness.

SEARCHING

Anyone with a chronic illness is searching: for a cure, for relief, for a way to have purpose, for meaning. A big part of my search has been finding ways to accept my life as is pain and all. When I went through a 10-week pain therapy boot camp last summer (see post), I went through Acceptance and Commitment Therapy counseling. My counselor recommended a few books: Wherever You Go There You Are by John Kabat Zinn (see post), The Happiness Trap by Russ Harris, and The Book of Joy by Douglas Abrams written about the week of discussion he had with the Dali Lama and Desmonde Tuti.

I picked it up, finally, after purchasing it last year. I’ve struggled to read print in a book and have been mostly listening to books via Audible or Libby. I’m really enjoying the book, but these past few days the words are speaking to me in a different way. The weight of the murder of George Floyd on May 25th and the recent protests have come to bear on everything I’m doing and thinking.

While lunching with the Dalai Lama, Tutu begins to talk about the basest human longing, to be happy. He says, “Everyone wants a happy life-and our individual happy life depends on a happy humanity. So we have to think about humanity, discover a sense of oneness of all seven billion human beings.”

Again and again, the question I wrestle with is why do we draw these lines of hurtful division? What can one individual do against a systemic racism and prejudice that the great minds of our times and history have not been able to dismantle?

HOPING


I have to have hope; the alternative is too unthinkable. However, the fatigue of discouragement comes from knowing this narrative hasn’t changed and since just before the presidential election of 2016, has become more jagged and divisive than ever with the encouragement of our current governmental administration. It is palpable like weights pulling me down. And while I feel like this, I also feel guilty for this because who am I to feel down? I am not having to worry about my son returning home in a coffin after a simple trip to the store. 


One of my friends posted this about white privilege: “You may have had a very difficult life story, but white privilege is when those difficulties are not because of your skin color.” I would go on to add that the color of my skin has actually pulled me out of many of my difficult circumstances (see related post) allowing me to have a life that, yes, I have worked for, but my work was celebrated and strengthened because of my race.

The hope I have is found is in the heart I see in my own children and my granddaughter. Listening to President Obama talk yesterday along with other intelligent, young, black activists who have already been working towards bringing about change, he says, “…I see what is happening with young people across the country. With talent, voice, and sophistication that they are displaying. It makes me feel optimistic. It makes me feel as if this country is going to get better.”

Here’s the link to 

TRAUMATIZING

By now most US citizens, if not the world, have seen the traumatizing video of the murder of George Floyd at the hands of a police officer while other officers looked on without intervening. As for me, I couldn’t bear to watch it. What impacted me was the public talk by his brother and then another by his wife with his six-year-old daughter lovingly caressing her mom’s long hair as his she spoke through her tears.

This little girl, so so innocent, had to be told that her daddy died because he “couldn’t breathe”. I can’t imagine this mama having to tell her daughter this. I can’t imagine this little one’s life going forward as she becomes more and more aware of what actually happened.

HONORING


This past winter, I visited a health facility in Chicago (my daughter was attending a conference there), so I was allowed a guest pass to hang out for the day. Besides walking the track and swimming, I wanted to use my time to write. I went into the “senior” room because it had a place I could sit and had electrical outlets for my laptop. Besides not being one-of-the-gang that obviously had been gathering there daily, I was the only white person in the room. I sat at an empty table and plugged in to begin writing. I noticed some quite talking and glances my way. I realized later that I had taken a table that a certain group of women used after their Zumba class.

I couldn’t connect to the WiFi, so I approached one of the women talking at the next table who had her laptop up and working, leaving my things taking up a chair and spot at the Zumba group’s table. I asked the tech-savvy, older black woman if she could help me log on. As she, proceeded to welcome me and then helped me to find out the problem I was having, she indicated that the women were wanting their usual table. I could tell she wasn’t a part of the group and that she thought their predicament was a bit funny. Immediately, turning a bit red, I went and gathered my things and headed towards the door. But this tech-savvy woman invited me to sit with her and her friend. Soon into our conversation, we discovered that we were both retired teachers and spent the next hour or so talking. We had so much in common! And the little group of Zumba friends, checking with me that I didn’t still claim the table, went on to have their daily talk over coffee and bottles of water.

Later that night, I began to think about the uncomfortable feeling I had had in a place where the only thing that was different about me was the color of my skin. I also thought about how that “fish out of water” feeling left me as I totally connected with a kindred spirit despite our difference of melatonin.

To honor that special meeting, I decided to write the poem below. I understand that staying to those who are similar to us is comforting. It’s part of our biologics that we do so. While it’s needed when we’re infants (to attach us to our protective parents), it is not as we grow older. Yet, this segregation that we choose continues. This seclusion leads us then to develop fear. If that fear is not checked, it will lead to anger and hate.

While stepping out to connect with those who are different from what we see in the mirror is a bit scary and uncomfortable, it brings about an understanding that will heal our society. And if we do this, we will be blessed with a richness and vitality that only that type of connection can give. We lose so much by staying in our own ponds.


RESPONDING


So, what can I do from my little dot on the global map? There have been many wonderful resources posted this past week, so I will only include a few. But I encourage anyone who has read this all the way through, to really do a self-check to see, as one friend wrote, “where you are in your anti-racism work”  and then, go forth and do something to heal this nation.

Pink heart on peach background

The format for this post is thanks to A Chronic Voice link-up. This month, the topics were searching, hoping, traumatizing, honoring, and responding. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at June 2020 Linkup (scroll past the prompts to find the linked up posts).

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.

Writing With FIbromyalgia: Choose to Make Every Day a New Start

Pettit Lake Sunrise
Photo credit 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 they had 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.


Doctors Told Me My Anxiety Levels Were Normal


I reported to my OBGYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me I was fine, I 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 OBGYN.

She said that it was pretty normal to have the anxiety levels I was experiencing. She put me on Lexipro 5mg, which seemed to help at first. Then the following start to the school year, things worsened, so I went on a higher dose. 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.



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.”

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 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 in your head, 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.

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. However, I was relieved with that diagnosis and was happy to let the Vyvanse/Lexipro combination help me through the day, functioning fairly well.


My daughter and I teaching my 
granddaughter how to swim.

The Deep, Gnawing Pain Returned and Got Even Worse

This brought me to the end of a very stressful school year (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, the pain returned—a deep, gnawing ache that began in my legs.

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 looked 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 my brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.


Finally, I Was Diagnosed with Fibromyalgia: A Relief


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 meds like Cymbalta scared me to death.

By December 7th, I was on long-term leave and gave in after really wanting to avoid taking Cymbalta. 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).

Officially Diagnosed with 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 for the diagnosis because it meant that I would be eligible to get into the program and in my mind, get back to living.


My 6th-grade students writing in our classroom. 
We have 1:1 Chromebooks 2017.

I Prefer to Handle My Fibromyalgia Symptoms in My Own Way


There was a time that I listed 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.
  • Big fluctuation in body temperature, especially in 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.
  • Hands and feet edema.
  • 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.
  • Acid reflux: I went through a Nissen Procedure 2016, but it really didn’t do much besides make my stomach hurt all the time.
  • Bowel issues: Diarrhea to constipation and back again, never really “normal.” However, I think this is more due to supplements and what I eat.

Why I Now Have a Blog About Fibromyalgia


Why I decided to start a blog about my experiences: I did not know what fibromyalgia was until I was diagnosed this past November 2018. Being the teacher/learner I am, I began to research and found great resources (some really bad).

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 that’s my purpose. If no one reads it, it serves as me doing developing what I love (writing) and helps me to process my journey.


Me writing after a day of paddling 
at Algonquin Provincial Park 2016.

How I Manage Writing with My Fibromyalgia Symptoms


How fibromyalgia affects my writing: As I’m new to taking time for myself to focus on my writing and still seem to be going through some ups and downs with fibromyalgia, I can give you what I’ve done so far.

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. Had-to doesn’t work well for me or the fibromyalgia it seems. I did the had-to for so long.

So, 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.”)

I have my writing area set up. I love to sit looking out at the lake (I’m lucky 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).

I’ve always found inspiration from writers. I love to watch author interviews on YouTube. Currently, I’m taking a fiction class with Neil Gaiman online through MasterClass.com. His insight and talking about the thinking behind his writing ignites me.

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.)


I want to be the “fun” grandma, 
present and active. 

The Goal of Writing: Not to Impress, but to 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, 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.


Writers with Fibromyalgia: 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 a “I’m starting afresh.”

I’ve written and will be writing more blog posts about what is helping me live my life FULLY despite having pain. For me a big one is a wonderful yoga studio that focuses on healing and being well as well as community, breathwork/meditation/EFT to help calm my brain, learning more about brain plasticity and ways doctors/scientists/everyday people are using it to help bring about positive changes in nervous system disorders/diseases.

* * *

Katie Clark recently retired from 32-years of teaching reading and writing at the middle school level, and has decided to write. After her diagnosis with fibromyalgia caused her to take an abrupt and permanent leave from a job she thought she’d have into her 80s, she decided to record her journey in her blog painFULLYliving.com.

This term painFULLYliving came from her pain-psychologist who helped Katie to understand that she can allow fibromyalgia to define her or accept that it’s only one part of her. She chooses each day with the help of her family and friends to live life fully. Through her writing, she reflects and grows and hopes to help others along their own journey. She is well-loved by her family and has always felt that her main purpose in this life is to be fully present for them.



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?

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.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Mother’s Day Memorial: A Mental Health Check In

My mom’s senior portrait; she was
only 17 years old.  To me, she looked
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


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.

Mom and her friends from her time
in England.  She told me that
the man on her right was suppose
to come to America soon after so that
they would be wed, but he never did.

UPBRINGING

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.

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.


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.


Snowstorm of 1967. Mom built
a snowman for the two of us.


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.



She allowed us to have pets. 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.

MY VERY CORE

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.


This isn’t the actual bike, but
it looked very much like this one
(except 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 70’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. 

ACCESSING


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.


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.


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.


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.

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):

The format for this post is thanks to A Chronic Voice link-up. This month, the topics were foreseeing, panicking, upbringing, accessing, and soothing. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at May 2020 Linkup (scroll past the prompts to find the linked up posts).

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.


Click link Subscribe to Pain FULLY Living Weekly Posts by Email