Embracing life with chronic pain and illnesses.

Posts tagged ‘Chronic Pain Syndrome’

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

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.

A Father’s Memory

I recently relayed a story to a friend of mine. Immediately following she asked if I had written about it on my blog yet…

A couple of weeks ago I received a phone call from my parents which was earlier than they would normally call.  Of course, I was concerned that something was wrong so instead of answering the phone, “Hi There”….it was more like, “What’s wrong Mom?”.  She quickly reassured me that nothing was wrong.  She said that Dad had something he had to tell me.

With a huge sigh of relief, I waited for my Dad to come on the line.  (Dad, if you are reading this…forgive me for my summarization!)

“Good Morning, Stace! I was reminded of something that was too long to text you about.  It was when we were living in Gladstone; and, you were a toddler.  Every day that I would come home from work, I would poke my head over the fence and hear you squealing…then you would come running, smiling and squealing to me.  That was the best part of my day!”

What a great way to start the day….and what a great memory to hear my Dad share.

Opioid Effects

We have all seen the commercials on TV…those commercials for medication to combat opioid induced constipation. We know that opioids as well as any type of medication (prescription or over the counter)…even the simple Tylenol can cause constipation.

My system is extremely sensitive…which has really limited what medications I can take. I have also had to modify my diet to a Low FODMAPs diet for my IBS-D.

My husband and I had been very hopeful for the opioid that I could tolerate. After all, it is helping me to get some sleep and helps take the edge off my pain. I have been eating dried prunes (they are not Low FODMAPs but I have determined what I can safely get away with), sipping warm water, and occasionally using Milk of Magnesia.

For the first few months, this was working great! Yet now, I am faced with the reality that my body is “on to me”. My husband noticed my swollen belly…around my stoma. Yes…the worry that had been at the back of my mind…is making itself blatantly apparent!

I will have to revert to what my surgeon had me do when I was recovering after my colostomy…I will start taking one tablespoon of Milk of Magnesia every day…along with as much fruit as my system will tolerate…in hopes that my system will respond so that I can continue taking the opioids.

Thankfully, my pain specialist and the maker of the pain pump are working with my new insurance to get the pain pump trial underway. My underlying hope is that I will have a successful trial and be able to go that route…forfeiting the opioids all together….only time will tell!



Just as lightning

Pierces the darkness…

So does the pain

Coursing through our bodies.

Just as nature

Can offer a hint…

Our bodies can also

Provide that sense of being off.

Then out of nowhere

The flashing light….

Followed by the roar

The deep sounding rumble.

The pain strikes

Sudden and undetermined…

Not always the same

Yet it is blinding and searing.

Just as the length

And the strength of the storm…

Builds and threatens

So do our bodies respond.

Hide and Seek

Just out of grasp

A glimpse caught…

Around the next corner

Creeping slowly…

Hopes abound

Maybe this time…

Nothing! How could this be?

So elusive…so evasive!

Riding the waves of pain

The current pulling strong…

Weakness surrounds

Sensations overwhelm…

Continue to search

Perhaps in the closet…



It will be found…

The master of

Hide and Seek…


Hidden Blessings

The path of pain

Its winding trail

The upwards climb

The downhill slipping trek…

A gaze upward

Toward the brilliant blue

The warmth of the sun

Beating against skin

Sense of balance lost

On the ground…

A shake of the head

An inward groan

Yet small smile

Then a gentle voice

A strong hand offered

“Thank You”!

Back on feet

However unsteady…

The path continues

Twists and turns

The sound of water

Trickling over rocks

The gentle sounds

Of the babbling brook…

Again the sound

Distracts the body

On the ground

Not knowing how

Again crumpled

A slight shake of the head

Managing a smile

While summoning strength

To once again stand…

A gentle hand

Touching the shoulder

The wanting to wince subdued

A gentle turn

Hand outstretched

To gently be drawn

Back to your feet…

The path inevitably

Leads you home

To seek rest

To hope to restore

Some type of strength…

A simple knock

A shuffle to the door

Smiling faces

“Thinking of you”

Welcomed in

To share a few words

To sit as companion and friend

To offer a prayer and hug…

These are but a few

Of the “Hidden Blessings”

Of chronic pain…

Life at Home

A recent visit from some dear friends expressed the importance of those of us that are living at home….separated from the world…our health preventing us from physically participating with others.

It is hard to explain what it is like to those can easily walk out of their homes to hop a bus…to walk…or to get into a vehicle and head off to a destination without thought.

For those of us…like myself…the idea of a ride in the car is the highlight of day!  Even though we know that we will be worn out…that it will take a toll…

I know that the hardest part for me has been the separation from people….the fact that the only interaction is my hubby and son…not that this is bad…it is just not normal!  Just think!  Think of the number of coworkers…friends….you come into contact with on a day to day basis….if they just suddenly disappeared???

I have come to appreciate the weekly visits of some dear friends….while I struggle with the fact that our Church in a neighboring community has not yet been able to find someone willing to bring Communion….

I see there are many opportunities to serve those that are homebound….I feel that God has  blessed me with this first hand opportunity…to see the need….as I am one….

I am no where near able to help anyone else….I just hope that those reading this can see how important their “ability” is for those of us that are bound by our physical restraints.

Do not take me wrong…I am thankful for my loving husband and son…for our neighbors and friends….and family that provide help and strength….I am being made much more profoundly aware of others….

Others trapped within the walls of their homes….I worry that they do not have the support system that I have….that they are yearning to talk to someone….

Yet Another Specialist

Yesterday I met with a pain specialist with a background in anesthesia and chronic pain conditions.  What impressed me most was that he had taken time to review my file…he was also very gentle with his exam…understanding that I was all ready hurting.

Our discussion was very frank….he reinforced the fact that so much is not yet known or understood about Fibromyalgia.  He also said he could easily say that I am the worst case he has ever seen.

Due to my body’s “unique” response to medications…..basically….overly sensitive to almost everything….he was very pleased that I could tolerate the daily 60 mg tablet of Cymbalta. He reassured me that Fibromyalgia is a true diagnosis….it is part of the Chronic Pain Syndrome family.

As he discussed some possible options, he took time to write the various ways to address Fibromyalgia….as he spoke about them…summarized by the headings of Meds, Other Meds, Functional, Behavioral, and Others….he crossed off all the ones that I could not have.  The few options left were assigned to me to research.  Like he said….I know my body and how it reacts better than anyone…

Once home, I was excited to begin my research.  Of the three medicinal options of Named, Naltrexone and Ketamine Infusion…..my review of the rare side effects (which inevitably are how my body responds)….quickly ruled out the first two.  The Ketamine Infusion remaining as an option.  One that my husband and I are hesitant about because of my body’s usual reaction to anesthesia…..even thought this would be an extremely low dose.

The one option that he discussed that really piqued our interest was that of Functional Medicine….there is a doctor who is a leader in this field within about a 45 minute drive. The specialist spoke about the additional tests that would be done, saliva, blood work, etc. that would be sent to various testing sites to determine chemical imbalances, etc. Much more detailed testing than has been done to date.

He also praised us for all the effort and work we have put in so far….the many specialists, tests, and research were good.  We have narrowed the field…..he felt that the Functional Medicine would be the next best option….to exhaust all medical tests that exist at this time.

We also discussed what could be an option if Functional Medicine is unable to offer any sort of relief…thankfully any type of a radical decision (like an internal pain pump)….is quite a ways down the road.

I will have a follow up with my pain specialist to review my research and to discuss our preferred option(s) in about two weeks.

I have also made an appointment with the Functional Medicine doctor….which will not be until the middle of July.  (Yes…I requested to be placed on the cancellation list….and I called my pain specialist’s office to see if they could help “pull any strings”.)

In the mean time?  I have been instructed to continue stretching daily.  I am to consider “stretching” my exercise…..be diligent and not overdo….just the gentle stretching to help the tight weak muscles.

For the first time, I feel that we have a “game plan”….it will not be quick….that is for sure!  But there is a plan!  And I have the right doctors in place…


We Are Unique


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