Embracing life with chronic pain and illnesses.

Posts tagged ‘hidden illness’

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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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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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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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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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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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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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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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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Storms, Fibro & Chronic Pain

Those of us living with Fibromyalgia and its chronic pain (or chronic pain from other conditions) often find ourselves ravaged by a storm…literally! Scientists can argue that there is no relation…that it is not possible. Yet we know there is a link.

Our bodies shut down with no warning. Struck in the gut with a baseball bat. Then the pounding truly begins…every joint stabbing…headache is piercing. Every ounce of energy invoked to attempt movement…feet act as though they are trapped in the thickest mud…legs groan at the beleaguered motion.

Tears well in my eyes. I can barely manage a weak good night as I muster all effort into shuffling back to my bed. Past experience has taught me to not fight this demon. It is best to lie down…propped with pillows to provide as much relief as possible.

This will pass. I am hopeful for the morning as the worst of this storm will be over. My body will be exhausted and require additional rest.

This is a vicious cycle that so many of us live with…as we continue to battle our conditions and symptoms.

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Rain Brings…

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Rain brings an increase in temperatures

As it washes snow off the lava…

Rain brings the wind blowing the tree limbs

While cascading the water down the glass…

Rain brings the storm from the Northwest

As it batters the roof and races down gutters…

Rain brings increased ringing in my ears

Drowning out external sounds with its deafening pitch…

Rain brings the joint pain out of remission

Removing the relief of the higher elevation…

Rain brings elevated pain levels

As my body screams out for it to end…

 

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