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:)

Finding Your Passion: Nourishing the Soul

Woman resting on a dry bag while writing after backpacking near a lake.
This is going to be a short post.  I just got back from a few days camping with wonderful friends on the shore of Lake Michigan.  This has been planned for a year.  Our group, we fondly call the Wander Woman, started the hiking/camping trips July 2018 when we did a week-long trip to South and North Manitou Islands in Lake Michigan.  My friend, Lisa, reminded me that she noticed my constant massaging during that trip.  It wouldn’t be until November of that year that I fully understood that there was something very wrong with me. 
Related Post: 
I’ve been planning and working towards my goal of spending the week with them.  We were to camp in Canada at Lake Superior Provincial Park. However, the border between Canada and the United States is still closed due to COVID-19. So, instead, we chose a closer state park in that we could drive to.  Not everyone who had originally planned to join us could come: some due to family commitments, one due to the death of her mom (non-virus related), some due to not feeling comfortable in doing so. 
We agreed to be logically safe and trusted that our Wander Woman cohort had been safe prior to camping.  The park was not crowded at all and so we had no issues out on the trails, at the camp, using the restrooms, or on the beach.  We chose to wear masks only inside public places (the restrooms). 
Renewed Passion:
I am so energized after these past few days.  Wonderful conversation with my friends that ignited my imagination and funny bone, as well as a few shared tears, met with empathy and love. The photos will be the rest of my description of the joy that is currently bursting in my heart.
 

 

 

 

 
 
 
 
I can’t thank my friends enough for helping me get back my courage to stay in a tent after a day of hiking and swimming.  I have gotten my courage back to do this more often with my husband. I even talked my daughter into doing a short trip with me soon.  My soul is nourished and my passion blazing again.
 
Related Posts:
 
Another Passion Ignited:
 
My blog is ONE-year old now.  I have learned a lot from doing it.  I’ve made friends from across the country and the world.  I’ve learned from other bloggers how to live well with a chronic condition as well as how to blog better.  It, too, ignites my imagination and gives me a purpose that makes me happy.
 
So, when I found out that I was nominated for two WEGO HEALTH Awards, I felt that this passion was also recognized by those who have watched my blog grow and those who I have hopefully helped in some way.  It’s such a wonderful, supportive group that I have found through blogging.  
 
If you are interested in endorsing me via the link below (just being nominated is really amazing), I humbly thank you.  In my post for the end of this next week, I will be sharing out those who have most impacted my wellness journey, so that you, too, can learn from them (and endorse their nominations for WEGO AWARDS) if you should feel led.
 

 

 

I appreciate this time in my life that I am able to live my life fully (filling it with purpose and passion) alongside good friends and my family despite living with Fibromyalgia. I hope that I can help you find that for yourself as well as you journey through this life. 

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:)

FULLY Engaged Grandparenting Despite Living with Pain

 
 


Being a grandparent is one of the biggest joys that anyone can have in life. Being able to spend time with a new little love can knock your socks off when it’s been years since you last spent extended time with children. However, if you want to spend time with your grandchildren, you need to be the best you can be. Your time and your effort put in are both going to shape your grandchildren in the future – your role is key!

There are some ways that you can be a fantastic grandparent, but the key point here is that by being yourself, you are already fantastic. Your grandchildren will love spending time with you, as long as you are taking care of yourself. Chronic pain coming from Fibromyalgia can steal away special moments with your grandchild if you haven’t found ways to manage it.  

 
Two years ago, I was overwhelmed by the symptoms of Fibromyalgia: constant, roving full-body pain, deep within the muscles and joints; utter exhaustion making any action seem herculean, and thick brain fog making my thoughts and language disjointed.  I’ve come a long way since that time, finding my way due to the help of a multi-disciplinary pain management program such as the one at Sound Pain Solutions.  Mine involved a pain psychologist, physical therapist, occupational therapist, and pain medical doctor, through working together, guided my journey through education on mind/body connection with how I can rewire my brain to help manage pain.

 


 

 

 

My wellness journey over these past two years has been fueled by my desire to be with my granddaughter and to be active in her life.  My current protocol using Low Dose Naltrexone, full-spectrum CBD, meditation, Yin Yoga,  swimming, taking walks, and being mindful to take breaks to rest both mind and body are allowing me to be fully engaged as a grandparent. 

 

Related Wellness Journey Posts:

The Benefits of Being a FULLY Engaged Grandparent

 

By being able to get my FM symptoms managed and able to be more predictable and present, I am now the grandparent that I want to be.  The benefits of the time my husband and I put into our granddaughter are innumerable. (As a granddaughter who was close to my own grandparents, I know first hand how that relationship guided my life, making me strong and self-confident.) Research has shown that the connection is reciprocal.

 

1. Reduces depressive symptoms in both

2. Grandparents (GPs) can give exposure to experiences and ideas that otherwise might be limited.

3.  GPs give a first-hand understanding of family history.

4.  A close connection helps grandchildren develop pro-social behavior.

5. GPs keep mentally sharp, active, and live longer when regularly interacting with their grandchildren.

6. Creates a deep unconditional love for both.

 

 

 

How to Be a FULLY Engaged Grandparent

 

Communicate: To be the best grandparent, you need to communicate with the parents – ie, your children! You need to ask them their rules, their routines, and their wishes for their children so that you can play them out, too. It’s polite to ask your children what they want for their children, even with your years of experience! You may have been a parent for most of your life, but it’s time for your children to make their decisions. If you want to make sure that life runs smoothly, you need to go with their wishes. 

 
 

  Dark haired woman, blond young girl, and bearded man all wearing sunglasses

My husband and I had the opportunity to really

 get to understand my son and daughter-in-law’s

parenting goals and style when they lived

with us for two years.  We have great respect 

for how they are raising our granddaughter.

They, in turn, have come to fully trust

that what we do strengthens and enhances

growing our little girl. We stay in constant communication,

even while she’s with us via text, photos, audio clips, and videos.
 
 
 

Be Silly: Grandparents are great for baking and gardening and cuddles, but there is nothing wrong with a little silliness, too! You can have all of the fun with none of the responsibility, and you get to hand the sticky, glittery, jelly-filled children back to their parents at the end of the night! As the silly, fun grandparent, you can always get the attention and love from your grandchildren, and the memories you’ll make will last you a lifetime.

 
 

 

Young girl  with hair in messy bun, wearing a headlamp & using an magnifying glass
My husband and I take our granddaughter’s lead. 
Her imagination astounds us.  
Here we are dressed ready to catch “Greenie,” 
the mischievous, naughty, super-villain that seems
 to plague our house and yard.  
I used to hate role-playing and make-believe, 
but now, I find acting like a kid with her 
to be invigorating. I watch in amazement 
as I see her thoughts percolating
 behind her ever animated, blue eyes. 

 

 

Love Your Limitations: When you’re grandparenting in pain, you only need to honor your limits and respect the pain you’re in. On bad pain days, choose activities that involve more reading together, movie nights and cuddles, and on good days you can get down on the floor and play with the train set. You don’t have to choose to feel guilty for respecting your limitations. You can teach your grandchildren a little patience and teach them about you at the same time.

 
Grandmother cuddling granddaughter on a couch
With my husband and I both retired, we often tag team.  When I’m getting worn out, Bapa might take her for a walk to the garden to visit the white frog she’s named Ghost who lives in the rain barrel there. Or he may take a snooze when she and I are doing a craft or playing a game.  But some times, especially when she spends the night, we have to let her know we need to take it easy.  We love watching kitty vs balloon videos on YouTube, read books, or watch a good movie on Disney+. (It’s also a great excuse for extra snuggles!) 

 

 

Don’t Worry About The Mess: Those grandchildren of yours are going to step into your house and leave it a paint-covered, glitter-bombed showroom. You can love the mess or reject it, but the best thing to do is embrace it. The house will be loud once more, and that’s exciting!

 

 

Blond haired young girl wearing fairy costume
When our granddaughter leaves, we often joke
as we look around the house
that the miniature tornado has hit; toys and dress-up
outfits are strewn everywhere.
Our new dining room table has glitter embedded
into the wood grain. There’s a bit of nail polish on the
chair, but you know, we don’t care. It’s just
evidence that we have had a wonderful time together.

 

 

We, grandparents, are lucky to have the chance to know our grandchildren. We have the opportunity to be fully engaged when we are with them (even more so than parents who have all the responsibilities that go along with parenthood). However, some of my friends don’t have the luxury that my husband and I have because their grandchildren don’t live nearby. Thank goodness for technology. It’s worth buying a special set up so that you are able to talk to them with video regularly. During the past few months of quarantining due to COVID-19, people are getting creative ways to use video chatting: 10 Activities to Make Family Video Calls Fun for Kids.

 
 
I’d love to start a whole section of blog posts on FULLY Engaged Grandparenting. If you have any stories, activities, suggestions, tips to being a FULLY Engaged grandparent (especially if you are also dealing with a chronic illness that can be an obstacle), I’d love for you to share them with me either in the comments section or by sending me an email (see contact me).
 

 

 

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:)