Embracing life with chronic pain and illnesses.

Posts tagged ‘Catholic’

Living with Chronic Pain Conditions

Words cannot explain the feeling of pain throughout the body…day and night. No positions help relieve.

Hard to express the feelings of dealing with this every day…minute…hour…month…year. It is all consuming!

I praise God for strength that is given to make it through the day. I focus on my family…wonderful Hubby, son and step son!

It is so unreal! Why so much pain and suffering? Yet you Our Lord went through so much more!

I praise God for each day and enjoy every moment with everyone!

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hidden conditions

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Loss and Dispair

I am reeling from the news of my sister-in-law passing yesterday.

I am a jungle of feelings, lost and torn.

Having to call my Son to give him the news. Not being face to face to hold him as he cried.

Knowing he will see is Uncle soon helps.

We just cry out “WHY”!

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hidden conditions

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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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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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chronic pain, hidden conditions, hidden illness

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Loss

As my body calms from the latest Fibro Flare with additional infections that I am prone to have, I am riding an emotional roller coaster.

I know that I am not alone…

We arise each day to slight differences in our symptoms. Our hidden illnesses and conditions exacerbate our pollen/tree/etc. allergies, or rather overly sensitivity to said allergies.  The beauty of Spring comes full during May…flowers, trees with blossoms, bees buzzing, birds chirping…

I am hit with emotions…

April is coming to a close…May is on the horizon.

I used to find myself reminded of the short rhyme — “April showers bring May flowers”…this is especially true of the Pacific Northwest.  I look out the window to see the snow loosing its grip on the mountain and see the many buds on the trees outside.  Yes, May is approaching quickly…too quickly…

This roller coaster of emotions is not new…it has changed over time…it will continue to impact in different ways.

I am not alone in feeling this sense of loss…raw emotion…tears welling…memories are stirred…

I do not want to be reminded…

I could feel your presence yesterday afternoon…I was given the greatest relief of my stresses/worries. I was powerfully overwhelmed by the greatest peace. I had to smile! I could hear my sister’s voice… “You are such a Dork!  Remember that you handed the keys to God. Now step back and listen.”

You always knew what to say…accented of course by the eye roll…or the slight throw back of the head…

We will relive those emotions associated with our loss and Heaven’s gain…

We will each celebrate the memory of your life…my dearest sister, Carrie Murray…while we embrace those close to us.

Love you, forever and always, Sis!

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chronic pain, hidden conditions, hidden illness

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Let’s Own It

Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:

“I am going to make sick look good!”

My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.

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chronic pain, hidden conditions, hidden illness

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Hope

It feels like an eternity since I have written a health update!

Again, I must express my gratitude for my pain pump!  It is the reason that my Pain Specialist has been able to determine that I have Sciatica (both left and right side)…. Sacroiliac (right side)…and now Piriformis Syndrome.

A week from Monday, I will receive another injection to calm the Piriformis.  We are working towards improved function of my right leg.  I am sure many of you have dealt with the Sciatic nerve(s) acting up: burning, numbness, tingling, throbbing, stabbing, muscle spasms, etc.  My right leg from buttock to the tip of my big toe has been experiencing these symptoms along with being unresponsive at times –foot will drag or leg will not move when I tell it to.

The issues with my right leg have been a big problem for years now.  I had come to accept this as just one more thing to learn to live with…yet now more layers to my medical conditions have been uncovered.  There should actually be improvement to movement!

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chronic pain, hidden conditions, hidden illness

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Backwards

Chronic conditions take such a toll…stretching us to our breaking point…like a tennis ball on an elastic cord…we are tossed about without rhyme or reason.

We are bombarded by new or worsening symptoms…as we start a medication, deal with interactions between medications, struggle with adjustments to our prescription(s).

Add new diagnoses that further complicate our all ready complex situations…we truly push our medical teams…as they are thrust into the unknown.

The inevitable “Flares” that strike…some we know are coming due to choices we make (like going out to lunch with a friend…attending Parent Night to meet our son’s teachers…a simple short ride in the rig)…others strike for no apparent reason…forcing us to cancel plans…to retreat to the safety of our homes.

It is no wonder that we often feel that we are going backwards…despite our best efforts.

Yet I caught a glimpse of something precious when I paused with my eyes closed…in that short time, I took time to review the past few weeks…months…and saw progress!

I am speaking of those little changes…sitting through a rented movie –actually being able to focus and watch it…no recent falls…sleeping in a four hour block at night.

Take heart! Even when we feel like we are going backwards rather than forwards, we are progressing.

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chronic pain

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