Embracing life with chronic pain and illnesses.

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.

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Tummy Trouble

It is amazing how far I have traveled on this path of chronic pain and illness.  The pain pump has been a major milestone!  It has given me the ability to determine where my pain and discomfort is coming from…rather than the symptoms just shouting over each other to be heard.

Almost two weeks ago, I was able to explain to my GI Specialist my abdominal issues with specific symptoms! With my complicated history which includes Pelvic Floor Syndrome, rectal prolapse, spastic colon, permanent colostomy (sigmoid colon and rectum removed), and IBS, it provided the glimpse that he needed to best determine the next step.  I will be undergoing a Gastric Emptying Scan next week to determine if my stomach is working properly…must determine just how much of my GI tract is involved.

I am anxious to find out if the malfunctions of my lower GI tract are “isolated” or if my upper GI tract is also involved.  Another crucial piece of my medical conditions will be better understood!

As so many of us with chronic conditions know, it takes time to put all pieces together.  It takes so much effort and energy to get diagnoses due to whatever symptoms are screaming the loudest!  Living with Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Neuralgia, Postherpetic Neuralgia, Paresthesia along with the above referenced GI disorders make determining the origin of symptoms extremely difficult.

So many years…so many doctors…so many appointments…not to mention the tests and imaging/scans!  This path of chronic illnesses and conditions is not easy…there are no easy fixes…it forces us to rediscover ourselves while it strips us of the lives we had.

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Viewing the awesome landscape of the early morning with the chorus of “Amazing Grace” playing in my mind…

“Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.”

The gift of a new day with just a hint of God’s power and majesty on display.

A Sense of Humor

Struck by the irony

I couldn’t help smile

Another lesson learned

With laughter from my mouth…

I knew this flare would hit

That it was going to overwhelm

No matter the preparations

No amount of rest would change it…

This morning I was given a gift

Unexpected and of great impact

Providing a brief window

To step outside of the intolerable pain…

I had done my part

Resting as much as possible

In anticipation of riding in the rig

To enjoy some time with my hubby and son…

There is truly no way to prepare

My body is its own prison

Yet it will not prevent me

From holding tight to opportunities with repercussion…

This path of chronic conditions/illnesses and pain

Is fraught with boulders, sheer cliffs, downed trees and more

Obstacles unimagined from the mind of health

It becomes the ultimate learning tool…

With overwhelming pain

Stabbing, searing, burning and tearing

Stomach cramping, blurry vision and headache

Lying down and praying for relief…

This flare will ease in time

Symptoms will once again manifest

In a more “orderly” fashion

Depending upon the combination of conditions…

I had gone to bed early

Anything touching my skin

Exacerbating my pain level

Simple prayer to beg for rest…

I knew I would be home bound

Legs heavy with slow methodical gait

Symptoms scream at the top of their lungs

A brief thought of riding in the rig…

Images immediately flash in my mind

Like viewing a video

I see myself saying a simple prayer

I am reminded of my promise to rest…

Caught and called out

I laugh and nod my head

Again amazed by an awesome God

Who shared some humor with me…

 

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…

The most difficult part of living with hidden illnesses/conditions like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS, etc. is trying to describe our conditions to those close to us.  I created the attached PDF to demonstrate how complex these conditions and their associated symptoms are…

LivingwithHiddenIllness

Irritable

The definition and synonyms per Dictionary.com are presented as follows:
ir·ri·ta·ble
adjective

having or showing a tendency to be easily annoyed or made angry.

“she was tired and irritable”
synonyms: bad-tempered, short-tempered, irascible, tetchy, testy, touchy, grumpy, grouchy, moody, crotchety, in a (bad) mood, cantankerous, bilious, curmudgeonly, ill-tempered, annoyed, cross, ill-humored, peevish, fractious, pettish, crabby, bitchy, waspish, prickly, splenetic, dyspeptic, choleric; More

  • MEDICINE
    (of a bodily part or organ) abnormally sensitive.
  • MEDICINE
    (of a condition) caused by abnormal sensitivity.

I have been praying and reading scripture while wrestling with this beast.  Many questions have come to mind:

  • Is this a “new to me” Fibro Flare symptom?
  • Is this the result of the intense stress of fighting for SS Disability (26 months to finally receive a “Favorable” decision)?
  • Is it the result of being overwhelmed emotionally due to the “Favorable” decision?
  • Is it a side effect of medication?
  • Is it the after effect of changing medication?
  • Is it the result of being home bound?
  • Is it the result of frustration that the simple act of riding in a vehicle for any amount of time triggers a Fibro Flare?
  • Is it from not getting enough sleep?

The questions could go on and on to other tangents as well. My attention span is close to nonexistent. I would liken it….to a young child…distractions are everywhere! The sights and sounds derail me all too easily.

All that is certain is that irritability is a foe!

 

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