Embracing life with chronic pain and illnesses.

Posts tagged ‘discouragement’

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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chronic pain, hidden conditions, hidden illness

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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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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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Two Steps Backward

2017 has proven to be a rough year so far!  The arctic front that came through almost two months ago wreaked havoc on me resulting in a nasty flare.  Then with the change of insurance, there were challenges with getting Cymbalta approved…leaving me with the experience of going cold turkey…two weeks of intense withdrawal symptoms on top of the Fibromyalgia symptoms.  This followed by a severe bladder infection.

I did have a bright spot! Insurance had said yes to the pain pump…so I was looking forward to a pain pump trial at the end of this week. That is, until this morning.

I received a call from my pain specialist’s office….expecting it to be the final instructions prior to the trial.  Unfortunately, I was to receive the news that insurance had approved the pain pump….but they denied the medication. What?!?!?!?  Yes…the medication was denied.

My specialist’s office is approaching different manufacturers to attempt to find assistance for me so that we could go forward with the trial….after all, you have to be able to get the medication in order for the pain pump to be useful! LOL

Needless to say, it was another sinking moment. That too familiar, wind out of the sails feeling…it really does seem that for each step forward I am taking two steps backward.

My faith is strong. I know that if I am meant to have this opportunity the pieces will eventually fall into place! For the time being, I will appreciate the medications that I am able to take.

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Discouragement

It is inevitable during our battle with chronic pain that we face discouragement. After all, we are battling on so many fronts!

We find ourselves struggling with the guilt that our longterm illness/conditions cause…as we watch our finances depleted and debts grow…knowing that we are helpless to do anything about it!

You may be fighting for social security disability like I am…finding that each time we get close to scheduling a hearing…that the “backlog” has pushed our case out yet another two to four months…

Add another layer.. .that with insurance changes that placed me into forced withdrawal as I awaited my prescription to be approved…

I could go on and on…the important point is to understand that we we will have ups and downs…no matter how positive we try to be.  Remember that our projecting a positive front wears on us as well! Our limited “spoons” are often used before we can get out of our bedroom in the morning!

Allow yourself a time out…a day to sleep…a day to watch your favorite movies…the time will help you to “reset”. Our struggles will still be there but our spirit will have been strengthened.

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Waves of Depression 

It is inevitable as we struggle along,

The path of pain is long and coursing.

We are often tossed to and fro

The massive waves of depression 

Ever threatening to overtake and drown.

Understand that this is normal,

It does not make us bad,

Nor does it have to overcome us.

Our Heavenly Father is a beacon

The light to which we focus.

Just as darkness can threaten

The glimmer even as a soft flame

Ignites our inner strength and hope.

Others are sent to intersect

To offer friendship and consolation

Yet another sign to show we are not alone.

To take in every sight and sound,

To breath in the scent of rain on the wind,

To embrace every opportunity given,

To offer assistance to others

Never paying heed to our feebleness.

The waves will come, again and again,

Without warning…completely unexpected.

Turn your eyes to the light,

Do not worry about how weak,

The brightness grows as you focus

While being cast about.

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Incessant Pain

Think of these synonyms: ceaseless, unceasing, constant, continual, unabating, interminable, endless, unending, never-ending, everlasting, eternal, perpetual, continuous, nonstop, uninterrupted, unbroken, unremitting, persistent, relentless, unrelenting, unrelieved, sustained…

Yes…any one of these words is the perfect description of our life with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/ and the like!!!

Having had my second Ketamine Infusion just shy of one week ago…I have not noticed any reduction in any of my symptoms….actually…it has been the opposite.  I have experienced some of the worst days ever!

To say “worst days”….hard to believe when I continue to deal with almost every symptom possible….so severely debilitating…..so frustrating….and at times….SO discouraging!!!

As I attempt to rest….relaxing in my recliner….I am nauseous from the pain…the burning…the stabbing….the throbbing….the spasms….the muscle cramps…..the numbness and tingling…..etc…

I placed a call and left a message for my pain specialist….I hope to hear something tomorrow….

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