Embracing life with chronic pain and illnesses.

Posts tagged ‘Chronic Pain Disorder’

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

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

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.

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.

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.

A “New” Tomorrow

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As the sun sets

Majestic colors blanket the sky

The clouds seemingly ablaze

Before giving way to darkness…

So goes my battle with chronic conditions

The intense battle of the past several years

Is giving way to renewed hope

The darkness of unimaginable pain

Has lost its heavy grasp…

So goes my battle with chronic pain

The heartfelt prayers of others

In tandem with my own

Clearly demonstrate God’s hand

As I find myself filled with great anticipation…

So goes my battle with life changing illness

The precious gift of understanding

Provided by my medical team

Peace is granted in knowing

There are no answers…

So goes my battle with unknown conditions

The complexity of ailments

Magnified by extremely, overly sensitive systems

Prevent the use of most medications

The few options have been skillfully used…

So goes my battle with controlling symptoms

Addressing conditions that could be calmed

Along with carefully choreographed days

Fan the flame of hope restored

To embrace my “new” altered self…

So goes my battle with my new reality

 

 

 

 

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!

A Glimpse of the Unknown

Chronic illness and pain often leaves us feeling like we are driving a hazardous road in the blackest of nights in blinding snow.

I hear the tumultuous waves crashing nearby. My knuckles are white as I clinch the steering wheel ever tighter.

My body is overwhelmed, yet again, with increased stabbing pain and extremely overly sensitive skin…I am counting hours to my appointment tomorrow. A much needed refill to my pain pump and discussion of my latest MRI.

In the early morning hours, as I laid in bed feeling the pain ramping up, I prayed for a touch of relief…tears could not help but fall. I was granted a little more than an hour’s fitful sleep during which I was given an awesome dream.

I dreamt that I was clinging as tightly as I could to a rock as a storm raged around me…pounding pain, large hail stones striking exposed skin, winds whipping and tearing around me…every pore seemed to be screaming as the pain within was rising to the symphony around me. Then I opened my eyes to see that I was clinging to Jesus, his back taking the brunt of the forces.

I awoke with a renewed sense of hope…looking forward to tomorrow’s appointment…knowing that I am truly not alone…that my prayers are being heard.

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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