Embracing life with chronic pain and illnesses.

Archive for the ‘chronic pain’ Category

Precious Memories

It was 5 years ago today that my parents received the call. Carrie and Billy were in an accident. Carrie died at the scene and Billy was in hospital. All I could think of was getting to the hospital to see both of them! Just wanted to give Billy hugs and talk or sit.

Ally was able to meet me at the hospital to go in and see Carrie. Very emotional yet so reassuring! We could both tell that she is in heaven and just a shell remains.

Her Celebration of life and burial were amazing! All of those whose lives she had touch! Those from the law firm where she had been hired arrived in a bus! So many friends and family! Truly touched me.

Fast forward to today.

Our hearts will feel heavy today as someone so dear so endearing would be taken from us.

Yet Carrie’s legacy is living on through our memories, pictures, stories and her Memorial Scholarship awarded each year by University of Oregon Law School in her name. Students learn about Carrie and for 3 years now have been award the scholarship in her honor. Each one is touched by Carrie and so thankful!

I love seeing her picture and that smile! I will always hear her laugh and voice in my heart. She is part of us and always be so!

Love you forever and always Dear CareBear…

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chronic pain, hidden conditions, hidden illness

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My “New” Self

Battling chronic pain conditions like Fibromyalgia, Polyarthralgia, IBS, Pelvic Floor Syndrome, Sciatica, recurring Shingles, Sacroiliac Joint Disfunction, arthritis throughout the lumbar spine area, permanent Colostomy…the list goes on…is VERY difficult.

It tests every ounce of courage, forces us to dig deeper into ourselves. Faith, family and friends are our positive partners. However we can find ourselves alone, divorced and raising our child/children on disability income.

There are times to cry and we must give ourselves permission for that. The emotional, physical and mental control can really take its toll.

We must be patient with ourselves and our new reality. The acceptance of changed bodies due to surgery or surgeries and getting older. When I first had my Colostomy there was no mention of using support belts to prevent hernia, so it was very discouraging to go through a peristomal hernia and its necessary repair. And now the need to layer up with specialized support belt or active support garments is just “a part of life”….essential to my well being.

Let’s face it ladies, we are not sure how to take that big 50! We’ve seen images of older women with their boobs to their bellies. I saw this happen to myself at 51!! It was like they had lowered themselves at least two inches! Ahh!!! Scary!! So I treated myself to some active wear sports bras. Feel better and parts stay where they should without that nasty pulling of a regular bra.

It takes time to adjust to our new living conditions…a new house, change of routine, reviewing and re-examining our budgets. There is time to do this…when our minds are alert and focused.

Thankful for the medical team who have continued to try new out of the box thoughts on my behalf. These have made life easier. Yet reinforce, I am no longer that same person. I have adapted, grown in Faith, now better understand my body and its cycles, know when to ask for help, and embrace every minute of every day.

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chronic pain, hidden conditions, hidden illness

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Nightly Prayer

I can feel your presence

After praying or struggling with thoughts

That peace that surrounds like a warm blanket

Calming and allowing for some sleep.

Images will come to mind

Flashes from moments in the past

Pictures from life on canvas

Reassurance of the path now treading.

Realizing that this experience will help others

Praying for the lives that will be touched

A quiet peace prevails during turmoil

I just instinctively hold tight to my rock.

We have our thoughts about our path

The direction we intend our lives to go.

Yet God often has something else in mind

So embrace His direction and be thankful.

© Stacey deSoto — 2019

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chronic pain, hidden conditions, hidden illness

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A Golden Hue lo

oak-3762946_1280.jpg

As I lie in bed

A soft glow comes from the ceiling

It resembled an oak tree near a building…

The building shimmered as the golden light

Glinted off the bronzed and gold accents

Ricochetting casting the light into the tree…

The leaves accented with this soft light

Every detail striking as if in full 3D

The branches a deep gold color…

The texture of the bark

The drizzle of light coming off the leaves

I find myself reaching up…just wanting to touch…

The image fades

My mind is left to reflect

The golden hues shared with me this morning….

© Stacey deSoto — 2019

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chronic pain, hidden conditions, hidden illness

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Life Changes with Fibro

The most difficult challenge with Fibromyalgia, Chronic Pain Disorder, Neuralgia and the many other hidden conditions/illnesses that plague us, is the reality of how our lives change.

broken heart love sad
Photo by burak kostak on Pexels.com

As I have written in the past, we do go through a mourning process….just like when a loved one dies.  It was very helpful for me to review the 7 Steps of Grief…not that it makes it easier…it reinforced the fact that I was not “going crazy”.

I was SO unprepared for the realities that would come with my Fibro and other conditions.  My Faith, family, friends, and medical team have been lifelines as I have traveled along this narrow and twisted path.

  • Loss of Job — I could no longer physically or mentally function in a productive manner.  (I have learned to take advantage of those moments when the “brain fog” lifts ever so slightly.)
  • Pursuing Disability — This turned out to be very long, challenging, and stressful.  In my case with Fibromyalgia and Neuralgia (without a known cause), it took over 30 months.
  • Financial Implications — Such a long wait for Disability drained our reserves, and forced more dependence upon credit. Slowly and steadily we are turning the tide.
  • Divorce — The reality of the rift that had developed. My son and I are on our own. This transition to being a single parent has been rough.
  • Driving Assistance — I am so thankful for the friends I have who take joy in driving me to my injections when needed.  So glad that these tend to be about 3-4 month intervals!

 

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chronic pain, hidden conditions, hidden illness

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“Baby Steps”

My Pain Specialist keeps telling me “baby steps”.  I must focus on each day alone…allowing my body to set the pace.  Having a goal (i.e. 4 laps of the house) is good…yet must taper with where body actually is (i.e. 2 laps of house a day).

zcXeXAxgiRemember, each activity that is performed during the day…each one is exercise. These include getting dressed, fixing breakfast, cleaning dishes or just prepping them for dishwasher, feeding dogs, brushing teeth, washing face, shower (when enough strength), letting dogs out, walking lap of house, laundry (non shower days), heating lunch, prepping/making dinner…

Balanced with the necessary breaks — sitting in chair with ice, using ball for feet, laying on the couch, prayer time, reading, watching TV, computer time…

adult affection baby casual

Photo by Pixabay on Pexels.com

God placed the perfect image into my mind!  I was taking my first steps…true “baby steps”…my little hands grasping large, strong hands.  My steps erratic and unsure…just driven by instinct to push through.

“Baby steps” are just that! The small steps taken by toddlers not slow paced adult steps! This insight has provided such a sense of calm, as I am further reassured that Heavenly Father is with me, assisting with my chronic health battles.

I azcXeXAxgim no longer viewing my activity level and where I am currently based upon “normal” perspective.  I am not recovering from an injury.  I have permanent health conditions that severely impact my quality of life.

Viewing my situation with this “new normal” in mind has truly lightened my load!

 

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Silence

As the snow deepens

The silence grows

As if time is standing still…

My mind is refreshed

As this quiet seeps to my core

Banishing all doubts and fears…

The clanging in my body

Fights the stillness found within

I close my eyes to return to the calm…

The falling snow builds

My mind again quiets

The screaming in my body subsides…

Such a blessing is granted

To reaffirm Faith that is tested

My soul is stirred…

© Stacey deSoto — 2018

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chronic pain, hidden conditions, hidden illness

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“Squirrel” Brain

This title makes me smile

As I attempt to relay my reality.

Complex sentences, vibrant words

I can see and feel…yet not express.

Words jumbled and sentences started

To be left hanging as I slowly shake my head.

Fibromyalgia and many of its “companions”

Overload my brain causing words to collide.

I pray for grace and strength

As I struggle to remain calm.

Images of “how it used to be”

Flashing in my mind’s eye like lightning.

Simple conversation and odd pauses

Exasperated by stress…good or bad.

Typing helps bridge this divide

As words appear on screen…

At the onset I had given myself permission

To write as if there were no grammatical rules.

My mind goes to our son when a Tiger Scout

An active mind so easily distracted…

Another mother summed it up — “Squirrel”

Attention span gone, the hunt is on.

Flighty and crafty, darting about

On the search for one of its stashes.

I smile when our teenager gently corrects

Better yet when he supplies the word I am unable to find.

Chronic illnesses/conditions force reform

Reminded of how we are but clay in the Potter’s hand.

Let go the frustration

Dive deeper into prayer…

Handing over the reigns

Trusting with our heart.

Deep breath taken

And laugh at the squirrel.

© Stacey deSoto — 2018

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Fibromyalgia— The Hidden Truth

  • I confuse my words.
  • I forget a question before I can finish asking it.
  • My train of thoughts 💭…
  • I fidget as there is no way to be comfortable.
  • My symptoms can vary by day…by hour…by minute.
  • I must simplify all areas of my life.
  • I can read the same paragraph over and over…each time reading it for the first time.
  • I am thankful for family and friends.

It is unreal! The pain is horrific…relief in sight next Wednesday will be a procedure to help my osteoporosis in low back.

I would never have asked for such a mess yet so glad that God is by my side as I deal with this. Just hope others can draw strength from my story.

Category:

chronic pain

Heartache, Struggle, Persevere

How dare you begin with such a roar!

This month of May is a Lion…

Roaring, growling and then standing proud.

No matter how hard I try to prepare

The end of April starts the roller coaster.

Seasonal allergies will kick in…

Like a last ditch effort to switch gears.

The pinched nerve in my back reared it’s head

Hoping to derail the oncoming storm.

This year was different!

The anniversary of your death, Dear Sis,

Felt like a fuzzy blanket

Wrapped tight about.

The ache of your absence still strong

Yet ever stronger the feeling of your presence.

Within a handful of days

Wishing Mom and Dad “Happy Anniversary”!

Then the greatest news from U of O Law School,

The first Carrie Murray Memorial Scholarship has been awarded!

Wave after wave of emotions…

Crying…laughing…singing!

Your birthday is just around the corner…

I see those brilliant blue eyes

Filled with a true zest and love of life.

Memories will continue to flood our minds

Strengthening our resolve

To celebrate your life and memory.

You are watching from above

Your touch felt by ray of sun or touch of breeze.

Love you, forever and always, CareBear.

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