Embracing life with chronic pain and illnesses.

Posts tagged ‘chronic pain’

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.

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

“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

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.

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…

 

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.

Don’t Underestimate the “Tools” Provided

In the early morning hours while saying a prayer, images were brought to mind.  It was as if I was watching a slide show highlighting the path of chronic illness that I have been traveling.  So empowering and providing such a tremendous peace, that I must share!

With spot light in hand, God provided a glimpse…a “bird’s eye” view of my path.  It was like looking at a map.  I could see that with each boulder, rock slide, downed tree, or gaping hole there was a small, hand drawn box.  The boxes ranged in vicinity to the obstacles…sometimes it was next to the obstacle, sometimes it was a mile…yet with EACH impediment there was a box associated with it.

This personalized Isaiah 64:8 — “But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.”

These boxes were the many “tools” that have been given to me!  I am truly humbled and overwhelmed as I ponder this revelation…friendships, medications, Bible verses, change in attitude, phone calls, songs, surprise visits, text messages…

Some of these “tools” reappear to demonstrate how some are repurposed like my hernia belt that my husband had modified for me due to my Colostomy.  This belt is now providing some relief to the Sacroiliac joint that is inflamed as I await the appointment for a steroid injection to reduce symptoms.

As I await results from additional testing, I am thankful for the “tools” that God has granted to me, especially for my family, friends, and medical team.

Another Tangent

As if our body’s aren’t under enough stress with our hidden illnesses and conditions, there always seems that more gets added to our plate!

I have been absent in dealing with “new” pain affecting my lower back and both legs. Results of the MRI showed Herniated discs (L4 and L5, S1 and S2) and arthritis in same area. So yes, definitely Sciatica.

I will go in for steroid injections next Wednesday. I do hope they provide relief. It would be SO nice to go back to my “usual” pain!

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