Embracing life with chronic pain and illnesses.

Posts tagged ‘Neuralgia’

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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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.

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…

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 Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

The Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

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