Embracing life with chronic pain and illnesses.

Posts tagged ‘technology’

A “New” Tomorrow


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





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.

Pictures Tell Why

These pictures reflect the reason that we choose to join our families…our chronic conditions would prevent such moments.

Another Scan Completed

Halloween morning I was scheduled for a Gastric Emptying Scan to see if my stomach is also involved in my GI issues.  I can hear the question all ready…”why did it take so long”?

Like so many with chronic conditions/illnesses, we are dealing with a number of disorders/syndromes that have a lot of overlapping symptoms.  In my case, the precursor was fissure trouble from a very young age.  These fissures were just the beginning of a long, hard path of acquiring diagnosis after diagnosis.  Strewn with procedures, further testing and surgeries.

This latest step is a “gift” from my current pain pump.  My GI Specialist would not have ordered today’s scan without my being able to specifically describe my continued GI issues with him.  This ability to determine (or better word — guesstimate) what condition/illness is the forerunner led to my realization that there is something going on that has not been addressed!  These continued issues of bloating, stomach pain, abdominal cramps were subtly different.  It was almost camouflaging itself as an IBS flare…yet, again…there was a nagging difference.

Fast forward to this morning’s scan.  This test was quite different from others in the past. No clothing had to be removed…would have been able to keep my coat on if I felt more comfortable in it!  It started with eating some “radioactive” eggs.  By the second bite, my body remembered that taste…albeit in a different format — thick shake and also a more liquid variation.

I remember looking at the bowl, afraid that I would not be able to eat it all.  I asked the technician how much was necessary for the scan.  His response was a few more bites.  Yeah!!  I managed to get enough down to head into another room for the scan.

Lying flat on the table, arms close to my sides, I was slid into position.  A boxlike piece was then lowered (which required some self talk to calm my PTSD).  The images were gathered in minutes.  I didn’t have to hold my breath or alter it in any way!

This scan process was performed roughly every 50 minutes.  So in between scans, I was wheeled back out to the waiting room (thankful that I had my comfy wheelchair)!  It can take up to 4 scans…thankfully, I only required 3!

The hardest part of this scan was not being able to take the oral pain med.  Thankfully my pain pump was doing its job! Would have never made it through this without it.

Laser Focus

Beware of the steady focus on pain alone

For pain is not the only symptom we battle

Yet pain’s voice can be the loudest

Blaring over all others…

Or worse yet, swallowing them into itself

The headache, the abdominal cramps, the stabbing in the feet

Forced to feed into the great voice called Pain…

Those with softer voices yet carrying horrifying weapons of their own

Like bloating, muscle spasms, brain fog, blurry vision, burning sensations

Are carried away on pain’s current, and its need to be in the forefront…

We must remember each one of our conditions

For each one carries its own set of symptoms

Oftentimes overlapping thus covering up the condition responsible…

This masking and blurring, often made worse by our medications

Further weakens the voices the need to be heard and understood

To better assist us in dealing with what condition is truly at the front…

While remembering that each day, each moment

We have no control…none whatsoever…except how we deal with the voices

Attempting to listen harder so that we might better strike at the source…

Conversation with Self on Fibro Brain

“Deodorant in second drawer…”

Absently looking into the mirror…


I slowly turn to leave the bathroom.

“Deodorant in second drawer…”

“Oh yes! I must brush my teeth!”

I turn back around

The early morning light

Cascading through the window.

I shuffle out the door…

“Oh yes! Must brush my teeth!”

I find myself in the bathroom again

My eyes happen upon the toothbrush

Hanging quietly, waiting…

“Oh man!”

Chills hit my body

Drawn to my reflection, again,

I forgot to put on my sweater!

I carefully navigate to the closet.

A glance around the bedroom

I smile as I move toward the bed

Reaching down to collect my soft fleece.

My mind is screaming,

“What did I need to do?”

A long, heavy sigh

I carefully put on the fleece

And begin my slow methodic walk

To my comfy recliner.

I stop part way down the hall,

Slowly shake my head

Another heavy sigh

As I continue to my recliner.

My body falls into the chair,

Feet up with body stabbing and throbbing

I pull the blanket over me;

Waiting for the worst of the pain

To ease enough to rest my aching body.

I find myself as if frozen in time,

“Oh man!! I forgot to put on deodorant!”

Update on Pain Pump

At my appointment last week with my Pain Specialist, I found out that all had been approved…ready for the next step…the actual pain pump surgery! So I have been anxiously awaiting for the scheduler to call me.

This evening I got the call!  I am to go in for some labs (no fasting required)…and am scheduled for next Wednesday!  The time and further details to come via the nurse who will follow up with me between now and Tuesday.

Since today was a busy day, I will rest tomorrow and go in for labs on Thursday morning.  That will give plenty of time for the labs to be reviewed and to make sure that there is absolutely no reason to delay the surgery.

I do know that this will be an outpatient procedure…should be 4-5 hours…then able to come home.

Will post more once I speak with the nurse…and of course will discuss my experience with the actual procedure and the process to dial in the medication!

For now?  I am just in awe…amazed at how fast all is now moving!!!!

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