Embracing life with chronic pain and illnesses.

Archive for the ‘hidden conditions’ 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…

Thought of Frankenstein’s Monster

As I was attempting to get out of bed, this thought came to mind. Frankenstein popped into my head.

Imagine him waking up from that electric jolt…

  • Body parts not responding correctly. Causing him to move in a stiff and spastic fashion.
  • Voices in his head saying “No, you are not the boss of me”!
  • Mumbling and groaning in the searing pain along his suture lines.
  • Feeling lost and alone.
  • Memories would flash in his mind that brought waves of emotion.

Thus my day begins. A smile brightens the day as I could so relate!

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.

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

Strength Gained Through Prayer

Chronic pain and conditions have “plagued” me in some way or form since my preteen years. It has most greatly impacted me during the past 15 years.

My doctors and specialists have conducted all tests imaginable…blood work, MRIs, specialized tests, scans, X-rays, etc.

I have been blessed to have had a few ailments that contribute to my chronic pain: Sacroiliac Joint Disfunction, Sciatica, Gastritis and Rectal Prolapse. They are further complicated by the generic labels that I have been given because my case is atypical (not sure if muscle disfunction, nerve damage or genetic mutation): Pelvic Floor Syndrome, Spastic Colon, Fibromyalgia, Polyarthralgia, and Chronic Pain Disorder.

I provide this backdrop to show how powerful and important prayer has been to me.

🙏 It has been that Rock to cling to when pain is tumultuous…

🙏 That quiet calm in my inner being, as my body screams out in wracking pain…

🙏 The nights on the verge or quiet sobbing, when His peace transcends…

God is our refuge and strength! Reading the Psalms strengthens the urge to pray. We see King David as a great example of someone who prayed…during low points and high points of his life.

It is a 2-way conversation. Especially when we remember to pause during or after our humble thoughts have been expressed.

God provides answers through the Holy Spirit. It can be a quiet calming, a dream, a thought that comes to mind, an unexpected knock on the door.

In clinging to our Rock…Our Lord Jesus Christ…we can triumph and celebrate that constant pain as we turn our pain into a Gift we present to God for his glory.

I have found this technique the most powerful for me. I visualize physically clinging and then relaxing my body as best I can and reflect on giving over the pain (yes okay to speak in detail or general terms).

A Golden Hue lo


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

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!


“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!


A New Year

As 2019 is well underway, my son and I are now on our own. My husband could no longer handle being around me….as I am a shell of my former self.

This new reality took some time for us to adjust. Now we find ourselves with our own routine…including me joining my boy and the dogs in the Family Room to watch movies or watch him play a video game. The couch provides such a cozy place to relax!

My weight loss has stabilized thankfully! All of the stress wreaked havoc on my all ready weakened body. Fibromyalgia, Polyarthralgia, Spastic Colon, IBS, Sciatica, Sacroiliac Problems, Pelvic Floor Syndrome, and the list goes on. These have taught me to be a fighter!

I hold tight to my Faith, Family and Friends. Having such a great support group helps tremendously!

My focus is on my high schooler and watching him develop into such a terrific young man! I am anxious about the next couple of years as we submit applications to colleges and work with school counselor to apply for scholarships! I know he will qualify for financial aid, yeah!

What great new adventures await us in this New Year?!


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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