Embracing life with chronic pain and illnesses.

Posts tagged ‘hidden illness’

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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A Flare Like No Other

Unrelenting pain

Coursing through every cell

The slightest touch exacerbates

Pressure from the softest cloth

Becomes a knife with serrated blade…

Skin crawling

Interrupted by nausea

Hunched over by the cramping

Right arm and shoulder on fire

My body a living pin cushion…

The light is overwhelming

Yet the darkest room offers no relief

No comfort to be found

A headache begins to form

Sensations are racing to and fro…

The intensity of symptoms

Raging and fighting…vying for attention

My brain is on overload

Waves of pain bombard me

My body sinks into the depths…

I take pause

To breathe deeply

Soft spoken words

Pleading for the slightest of relief

Peace comes to my mind…

My symptoms still enraged

As I am enveloped

By a sense of calm

Like a thick blanket

Renewing strength and focus…

 

 

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.

Living with Hidden Conditions

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!

 

Completely Unprepared

No matter our chronic condition/illness, our lives and the lives of those around us are forever altered.  We are stressed to our breaking point. The emotional toll overwhelms. We are in the midst of the most intense storm of our life.

We are tested at what feels to be beyond our limits as we battle our way through the health care system, working with our doctors to find some sort of relief to allow us to have a life of some kind…our loved ones and those close to us witness this first hand.

We embark on a new journey that is dictated by our bodies…grieving who we were and had hoped to be. We struggle to adapt…to accept the fact that we might be home bound, unable to drive, barely able to maintain good hygiene…yet we do.

Like me, you might have to fight for SS Disability.  Even with the assistance of an advocate/lawyer, this can be an arduous task.  My route went through denials…to a hearing…taking 26 months to finally have the Judge rule in my favor.  All the while, watching our resources dwindle to nothing.

I am thankful to be at this last step…awaiting the formal notification that will verify the monthly payment and solidify medical coverage.  Yet I am bereft of emotion…feeling hollow, raw…an empty shell…praying for this wave to settle quickly…knowing that this journey is far from over.

The War Within

Just as the thick cloak of nightIMG_7978

Hides the shadow

My body belies the reality

Of the war raging within…

It is bejeweled by the glistening stars

Twinkling like diamonds

Forming well known constellations

Whose paths were set to motion eons ago…

The path of chronic pain is arduous

It tests us in ways unimaginable

It attacks physically, mentally, and emotionally

Showing no mercy and no predictability…

It taunts with images of yesterday

It teases with thoughts of “normalcy”

Reality check…pain is real…symptoms are real

Yesterday is our distant past…

The challenge now is to create

To embrace our limitations

This is our new reality

To embark upon a unique journey…

 

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