Embracing life with chronic pain and illnesses.

Posts tagged ‘Pelvic Floor Disorder’

A Golden Hue lo

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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

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chronic pain, hidden conditions, hidden illness

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Life Changes with Fibro

The most difficult challenge with Fibromyalgia, Chronic Pain Disorder, Neuralgia and the many other hidden conditions/illnesses that plague us, is the reality of how our lives change.

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Photo by burak kostak on Pexels.com

As I have written in the past, we do go through a mourning process….just like when a loved one dies.  It was very helpful for me to review the 7 Steps of Grief…not that it makes it easier…it reinforced the fact that I was not “going crazy”.

I was SO unprepared for the realities that would come with my Fibro and other conditions.  My Faith, family, friends, and medical team have been lifelines as I have traveled along this narrow and twisted path.

  • Loss of Job — I could no longer physically or mentally function in a productive manner.  (I have learned to take advantage of those moments when the “brain fog” lifts ever so slightly.)
  • Pursuing Disability — This turned out to be very long, challenging, and stressful.  In my case with Fibromyalgia and Neuralgia (without a known cause), it took over 30 months.
  • Financial Implications — Such a long wait for Disability drained our reserves, and forced more dependence upon credit. Slowly and steadily we are turning the tide.
  • Divorce — The reality of the rift that had developed. My son and I are on our own. This transition to being a single parent has been rough.
  • Driving Assistance — I am so thankful for the friends I have who take joy in driving me to my injections when needed.  So glad that these tend to be about 3-4 month intervals!

 

Category:

chronic pain, hidden conditions, hidden illness

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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…

 

 

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chronic pain, hidden conditions, hidden illness

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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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chronic pain, hidden conditions, hidden illness

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Morning Majesty

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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.

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chronic pain, hidden conditions, hidden illness

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Conversation with Self on Fibro Brain

“Deodorant in second drawer…”

Absently looking into the mirror…

“Mmm…”

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!”

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chronic pain, hidden conditions, hidden illness

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Update — Coming Off Cymbalta

Coming off Cymbalta even with doctor supervision and support has been a HUGE challenge!! Yet, it is nothing compared to the cold turkey symptoms, albeit there has been some overlap.

During the first two weeks with the reduced dosage, I have experienced electric shocks, intense brain fog, burning that is overwhelming, skin beyond overly sensitive–lightweight blouse causing stabbing sensations that reach to my core, and nausea…to name a few.  I have also had increased ringing in my ears making sleep a challenge!

I am now to the next step…which is one of the lower dose capsules every other day for two weeks. Should be interesting! LOL  Since there is so much going on in my body, I have continued to take the two short acting opioids.  It will definitely be an interesting conversation with the pain specialist this next Thursday!  My guess is we will up the dosage of the pump and then stay at that level for 3-4 weeks as we see how my body settles.

It is very exciting to think that I will be Cymbalta free by Labor Day weekend!

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Phantom Pain

I am amazed by the power of our brains!  The fact that our brain fully “remembers” that functional body part that has been removed…that it can make us feel the pain and/or other sensations that existed when that body part was a part of us.

The fact that those neural transmitters can at random bring all those sensations to “life”. I am thankful that these sensations truly do fade over time.  I now deal with them them only when I have been greatly stressed or extremely worn out, and they fade faster now.

I had read about phantom pain…and for a while…I did not believe that it would ever let up!  LOL  Yet…it does…so if you are struggling with this…know…that it will improve!

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